Alanna has been living with Type One Diabetes since 1990, and has grown up advocating. As a child she attended diabetes camps, eventually becoming a counsellor and leadership training director through the Canadian Diabetes Association, she also has attended multiple international camps and participated in diabetes camping association retreats, and is an active member of the Connected in Motion community.
Alanna is a professional writer and communications strategist, in her spare time she enjoys being in the great outdoors. She has a passion for hiking, fishing, and exploring her province with her husband and her dog. You can find her on twitter @lifeont1, or occasionally blogging at www.lifeont1.com.
My name is Allison Perkins, I was diagnosed as a Type 1 Diabetic November 2014, at the age of 28, after falling into a coma after 2 weeks of misdiagnosis. I spent 18 days in the hospital and suffered from acute kidney failure that required several round of dialysis to cure.
I’ve since been self-taught with the aid of physicians, dietitians, and internet research about Type 1 Diabetes and have committed to helping the diabetic community with awareness efforts with JDRF and recently became a member of the FOE Ladies Auxiliary, that provides charitable donation to diabetic research and a diabetes research center.In the coming months, I plan to start locally organizing efforts and look forward to networking to help establish a solid framework. I can be reached at firstname.lastname@example.org and on facebook at www.facebook.com/allison.m.bowler.
My name is Ally Hughes and I currently live in El Paso, TX. I grew up in northwestern Ohio but relocated to El Paso due to my husband’s job. I recently celebrated my 20th diaversary (I was diagnosed at 7 years old).
I am a major advocate for diabetes related technology including smartphone apps and medical devices. I currently use a Minimed pump and a Dexcom G4 CGM. I’m presently a 4th year Health Psychology doctoral student at the University of Texas at El Paso. My research examines judgment and decision-making concerning health decisions using Internet resources.
I have always been interested in patient decision making, largely due to my experience as a PWD. I co-lead a local type 1 diabetes support group for teens where I help support group members develop a toolkit to deal with the stressors of growing up with type 1 diabetes. Follow me on twitter @allysonshughes. Email me at email@example.com
Amber Clour was born and raised in Norman, Oklahoma. 21 days after her eighth birthday, she was rushed to Children’s Hospital where she spent two weeks learning how to live life with Type 1 diabetes. She has embraced the thought of being a #walkingscienceproject and hopes to score an A+ on her efforts to maintain a stable BG while living life to the fullest – whatever that means.
Her life has been filled pursuing her passion for art, non-profit ventures and travel. In 2015 she stepped down as Executive Director for a community artspace and gallery to pursue her drive to pursue the DiabetesDailyGrind.com and Real Life Diabetes podcast. She often says, “Art is my passion, but diabetes is my life“. Amber’s – no filter – approach to sharing her story gives an honest look into her daily life in hopes of letting fellow PWDs know they aren’t alone.
33 years into the T1D Journey, Amber’s outlook on life is much different from the earlier doom-and-gloom years. Even though life as a T1D is challenging, she attributes much of her success to dealing with the struggles. Amber lives life to the fullest and enjoys time with close friends and family, red wine, long walks, decorating magazines, and new cooking adventures.
Ansley Dalbo has worked in the diabetes industry for the fourteen years, including eleven years consulting with Walmart Pharmacy to build and sustain their private label brand, ReliOn (www.ReliOn.com). Three years ago, she and her husband began developing a website and email education program for people with type 2 diabetes: www.DiabetesWhatToKnow.com.
Diabetes- What To Know is a free resource for people with type 2 diabetes and their families that delivers the basics of diabetes education through short, engaging videos. Our program takes participants step-by-step through how to manage diabetes and live a long healthy life. We also do video interviews with people with type 2 diabetes so that they can share their experiences with diabetes and what they’ve learned along the way— our goal is to provide a safe online space for newly diagnosed folks to hear other peoples’ stories and know that they aren’t alone.
Ansley graduated from Harvard University with a degree in English, and she lives in Atlanta. She’s an avid vegetarian cook, loves playing softball and following the Baltimore Orioles.
Hi! My name is Anthony Hightower. Most people call me Tony. I was diagnosed with Type 1 Diabetes at age 13 and have spent my adult life seeking to raise awareness, educate, and support research efforts.
As an avid cyclist, I co-founded a team called “Duck Fiabetes” and have leveraged this passion to raise over $60,000 to the American Diabetes Association’s Tour de Cure. I was recently a camp counselor at Camp Hodia, a camp for diabetic youth, where I was camp counselor to 12 teenage boys.
I was born and raised in Northern California. I own and operate an industrial Shrink wrap business. In my free time I love talking about Diabetes hanging out with family, friends, and my fur babies (Chelsie and Brady).
I am serving as Associate Director of Advocacy at Meethi Zindagi, which focuses on changing the mindsets & improving behavior of the society towards people with Diabetes (PWD). I raise the issues of social discrimination at different forums, one of which is our quarterly magazine. Our magazine includes articles for educating and empowering PWD. The main highlight of this magazine is the story (serial) of a young type 1 girl, aimed at highlighting social discrimination, and how she and her family deals with it. The concept is to help people connect with the story and inspire them to change their concepts regarding diabetes. Moreover I contribute in different segments of this magazine to educate PWD.
Meethi Zindagi also organizes quarterly diabetes retreats for young adults, in which I help in organizing the event and in designing the initial program. I myself, give public talks on these issues based on my experiences. In addition to this, I am working on building our advocacy team by recruiting individuals from the diabetes community, who attend our diabetes retreat sessions.
I am involved in organizing a workshop on effective communication between PWDs and health care professionals (HCP) in International Diabetes and Endocrinology Conference (IDEC 2016), scheduled in August 2016 at Karachi, Pakistan. The focus of this session is to bridge up the communication gap among them, which will indeed help in improving the life quality of PWD. This advocacy effort is aimed at releasing a joint position statement between Pakistan Endocrine Society and Meethi Zindagi. Based on the position statement, Meethi Zindagi will plan to approach hospitals and clinics across the country for encouraging implementation.
Bea Sparks was born and raised in Colombia (South America), and lives in the greater Chicago area with her husband. She was diagnosed with type 2 diabetes in April 2001, and became a member of the Diabetes Online Community in 2007 in order to learn more about her condition and help others.
She is especially interested in the mental health issues associated with diabetes and other chronic illnesses. Bea has served as an advisory board member for the Diabetes Hands Foundation, and the Diabetes Advocacy Community Foundation. She also participated as the co-host of DSMA en Vivo, an internet radio show for the Hispanic community touched by diabetes.
Bea has been featured in different blogs and diabetes related media. She writes about living with diabetes and depression at beasparks.com.
I have been an active member of the on-line diabetes forums for a decade. I have written over 10,000 posts primarily at DiabetesDaily and TuDiabetes where I have been a member for 7 years. I currently serve as the lead administrator for TuDiabetes. I have worked very hard to learn as much as I can about diabetes and pass it on to others in the community. That led to my being granted the “TuDiabetes Un-Certified Educator” award in both 2010 and 2011. I still work very hard on-line to support those with diabetes to not feel alone, to feel a sense of community, to deal with the emotional issues that come along with diabetes and to make sure we are all as informed as possible to be successful in our diabetes journey.
I started blogging in 2015 where you can read about my thoughts and adventures. My blog is entitled “The Trials of Type 2 Diabetes.” Some of the topics I have written about include my experience getting tested for Maturity Onset Diabetes of the Young (MODY), my experience attending the ADA Scientific Sessions in 2015, my take on highlights from AADE 2015 and most importantly my views on the emotional side of having Type 2. In particular I am aware and concerned about the treatment of patients with type 2 that communicates a sense of failure and the feelings of stigma, blame and shame that we feel when we attach Type 2 diabetes and these failures to personal shortcomings. I try to fight against the stereotype that we get Type 2 because of bad choices and that our failure to manage (let alone “cure”) our condition is a personal failure.
I have been active in reaching out face to face both locally and nationally. For the last 8 years I have helped run a local diabetes support group which meets once a month. We have nearly 100 members on our list and we meet at local public libraries and have activities (such as attending TCYOD just this last May). I have attended both Diabetes Unconferences and have already made plans to attend again in September 2016 and in February 2017. I also reach out to healthcare professionals, as mentioned above I’ve attended the ADA Scientific Sessions in 2015, AADE in 2013 and 2015, Friends for Life twice, the DiabetesMine Diabetes Innovation Summit. At the invitation of DiaTribe, I took part in a panel in 2014 directly engaging with the FDA about the issues that matter to patients with diabetes. Then this May, again in collaboration with DiaTribe, I presented at the FDA Open Public Hearing for the Advisory Committee considering a new combination drug combining Tresiba and Victoza into a single daily injection. Having been to MasterLab in 2014 and 2015, I very much look forward to another educational, exciting and invigorating meeting.
Twelve years ago I became a parent of a child with type 1 diabetes. I also became an advocate that same day for my daughter and others who have walked their path with diabetes. Shortly after our daughter was diagnosed we became involved with Juvenile Diabetes Research Foundation. My daughter created a team called Keri’s Cause where we have raised over $15,000 towards research for diabetes. In addition, my husband and I became Walk Committee Chair for three years for the Treasure Valley Walk to Cure Diabetes in Boise, Idaho. Through that experience we met some amazing families, business connections and organizations that assist persons with diabetes.
As my daughter got older, we started to support our daughter’s diabetes camp; Camp Hodia or also known as Idaho Diabetes Youth Programs. Today, I am currently on the Board of Camp Hodia and the chair of their fundraising committee. This committee has raised each year over $40,000 in scholarships for Idaho children who could not afford to attend camp. Living with diabetes should never make you feel alone and being able to help send children to Camp Hodia has enriched my life and I thank God for this experience.
Carla Medina joined AAV as a Volunteer in the summer of 2012. Returning from abroad and with a recently diagnosed son with Type I Diabetes, we wanted to give back to the diabetes community since we understood the conditions in Dominican Republic were not the same Rafael had the privilege to live under and so we started a fundraising campaign for the organization. Successfully managed to run a Bingo which resulted in fundraising dollars that AAV used to keep the educational center running.
Since then have participated in multiple advocacy campaigns under Aprendiendo a Vivir’s umbrella of services to the community. Diabetes summer camps, awareness educational sessions for kids & adults in private & public schools as well as in AAV’s educational center are among the activities held throughout each year. For the 5th consecutive will assist in hosting Ganemosle la Carrera a la Diabetes which is the biggest diabetes awareness campaign in DR, 6 weeks of media tours & publications around Diabetes which ends with a 5/10k race in the Botanical Gardens of Santo Domingo.
Carla Medina has a degree in Industrial Engineering. Resides in Santo Domingo, Dominican Republic with her husband Omar and sons Omar Jr, Rafael & Ernesto. Currently works as Director of Operations in Xerox and actively spends her free time serving in Aprendiendo a Vivir, currently occupying the position of Vice-president of the Board.
My name is Carolina Zárate, I was diagnosed with type 1 diabetes in 2004 when I was 24 years old. Since the beginning and when my diagnosis arrived I tried to learn and educate myself in my condition and this took me to share my experience and tell my story in a positive way. I am not a health professional, I am a publicist and an empowered type 1 diabetes patient who seeks motivation in others through images and letters.
I believe that education is important when it is accompanied by self esteem and acceptance.
I do not celebrate World Diabetes Day but People With Diabetes Day. This was an initiative created in 2011.
About me personally…
I love cats, they have been with me ever since this journey with type 1 diabetes started. Plus, my life was accompanied by a diabetic cat, named Nutella. I adopted and took very well care of her. I also like tattoos, contradicting myths and limits about this art in our bodies and diabetes. I crave for donuts so carb counting is one of my best allies to satisfy my tastes. I like speed in four or two wheels so I avoid hypoglycemias as much as possible to drive safely.
In one sentence “If the world of diabetes cannot be changed at least change the world of one person with diabetes”.
Charli Guerin is a para-planner for the Planned Approach- a wealth management firm out of Prairie Village, KS. She does all of the case work for clients, as well as is the main organizational lead on their company networking event. She obtained an English degree for the State University of New York in 2014, graduating with a 3.65 GPA. Her main objective was to start grant writing. She has helped organizations like the National Endowment for the Humanities, Childcare Coordinating Council of the North Country, 2LeafPress (a multicultural publishing company) by getting funding for their individual programs. Her passion for grant writing turned her on to slam and performance poetry for fun on open mic nights.
While she still continues to write, she returned to her true passion of event planning and organization when joining the Planned Approach in 2015. In the last year, she has also fully formed her diabetes advocacy and was given a scholarship to MasterLab in Orlando, Florida, in July of 2015. She is also a proud advocate for JDRF and American Diabetes Association. In November, she became a patient ambassador for The Betes Organization. She attends as many Diabetes related events as she can and loves meeting up with diabetics.
Chelcie Rice is an Atlanta-based stand-up comedian and 25+ yr Type 1 diabetic.
He has produced several non-profit fundraisers for The American Diabetes Association and was selected as one of Diabetes Forecast Magazine’s 14 Amazing People to Know and a former a spokesperson for Advocate Meters.
Currently he’s creating a comedy festival called Sugar Free Comedy to help spread awareness and raise more funds for diabetes research.
Chelcie’s approach to diabetes advocacy is using humor to help people understand what it’s like to live with diabetes day to day. He doesn’t make fun of diabetes or it’s complications spite of the fact that he’s lost most of the vision in his right eye. But he believes that by finding humor in the struggles we can empower ourselves to better diabetes management.
Chris Clement is a huge advocate of the power of community in diabetes management. Alone we are limited, but together we learn, grow, excel, and improve both our physical and mental health as we tackle the challenges that diabetes has brought into our lives.
Diagnosed with type 1 diabetes as a high school senior in 1997 I had very limited access to other people with diabetes. Existing knowledge and diabetes technologies helped me make due, but I was unaware of the resources that existed. That changed in 2012 when I began working for Alliance Health and exploring the information and community available there through Diabetic Connect. Soon I took on my role as Social Media Manager for Diabetic Connect and was introduced to the diabetes online community. My knowledge and understanding of diabetes management expanded quickly as I began connecting with so many wonderful diabetes advocates, influencers, and educators through the power of social media.
In 2013 I decided to own my diabetes when I got my first tattoo, a diabetes-related piece to remind me that my health comes first and that I should not be ashamed of the condition I live with. In conjunction I created DiabeticInk to feature the bravery and accomplishments of others who wear their own diabetes tattoos proudly.
Christian Chiappe has been a type one diabetic since 2002. A lifelong recreational athlete, he initially struggled to maintain an active lifestyle after his diagnosis. However, getting involved in the diabetes community empowered him with the necessary knowledge and management strategies to safely participate in any activity.
While completing local triathlons and marathons, he discovered a passion for endurance sports. Ironman triathlons, 100 mile mountain ultramarathons, or any other adventure you can think of… that is what he truly enjoys. Learning to navigate his way through admittedly extreme challenges makes everyday diabetes management decisions easier, at least in comparison.
Christian blogs about his training and racing with type one diabetes at www.anviltraining.com. The name of his blog is based on an analogy comparing the anvil, a metalworking tool upon which other tools are forged, to a strong physical and psychological foundation in endurance that emboldens him with the adaptability to tackle the most daunting race courses.
I am Dan and look forward to meeting as many of you as possible at the upcoming Master Lab 2016 Meeting.
A recently completed article is an insight to my approach to type 1 diabetes. Peter Drucker once said “if you cannot measure it, you cannot improve it. What can I change, improve and implement to improve outcomes?“
Although most commercial insurers now cover continuous glucose monitoring (CGM) devices, payment for this technology is routinely denied for an important and growing group with diabetes: Medicare beneficiaries.1,2 This occurs despite the May 2015 statement from leading professional societies of endocrinologists that such denials are “imprudent” for patients on intensive insulin regimens with a history of hypoglycemic events or frequent hospitalization.
While appealing for CGM coverage is not easy, some persons with type 1 diabetes (T1D) do try. EvidenceBased Diabetes Management asked Dan Patrick, an Ohio Medicare beneficiary, who this spring, became a 50-year Joslin Medalist,4 to share his story.”My story is a 50 year slice of life with diabetes!
Things that make me strong: Type 1 diabetes since 1983, hypothyroid since 1984, insulin pumper since 1988, labelled as insulin resistant and “double diabetes” in 2005, celiac disease since 2006, dupuytren’s disease since 2007, bilateral frozen shoulders, bilaterally carpel tunnel and ulna nerve compression, chronic trigger fingers, depression and anxiety for over 30 years, recovering from diabulima and survivor of abuse and dysfunction. DexCom user since 2015.
I am an Oncology Chemotherapy Registered Nurse with compassion for all walks of life. I feel every person I meet has something to teach me. Some, the lesson is easy to distinguish, others, it it much harder. A teacher, a store clerk may be easier, but a family member’ demands or homeless person asking for money/food may be much more difficult. Life equalizes all of us on the human nature plane, we just need to be willing to try to balance what we can and are given.
Although I have had Facebook for many years, I am just starting my blogging and other social media journey. I believe in doing what you love and loving what you do. Life is too short to be miserable and unhappy. Practice Random Acts of Kindness and Senseless Acts of Beauty!
Daniela Rojas Jiménez
My name is Daniela Rojas Jiménez, I am a a type 1 diabetic and have lived with diabetes since I was 10 years old. I am now 33. My life with diabetes, as everyone else’s, has been challenging. However through having a healthy lifestyle, and a positive outlook on life, I have managed to make the best of it.
In the year 2014 I initiated a diabetes support and consultation service in my home country, Costa Rica, called Diabética Solutions. Diabética Solutions brings together my studies in psychology as well as my knowledge and experience from life with diabetes, which fills a very large void that patients with diabetes and their loved ones encounter when they are given the diagnosis and even many years afterwards.
The purpose of Diabética Solutions is to provide people with diabetes and their loved ones with support and advice for everyday life, which greatly improves their quality of life. Presently Diabética Solutions provides its services to paying patients, as well as to patients who do not have sufficient economic resources to pay for our services, so they receive the consultation pro bono, I also give talks, and work hand in hand with “Día Vida, Asociación Pro Diabéticos de Costa Rica,” I am also a leader and organizer of the “National Diabetes Campo for Children and Teens” here in Costa Rica. I also blog to share my life experiences with diabetes, in order to help others understand you can, live a healthy happy life, and also this blog is meant to educate and empower the diabetic population in Costa Rica.
Daniele Hargenrader, founder of Diabetes Dominator Coaching, is the bestselling author of Unleash Your Inner Diabetes Dominator. She is a nutritionist with her Bachelor’s degree in Nutrition Science, a Certified Health Coach and Personal Trainer. Daniele hosts a diabetes-focused interview series on YouTube, is an international speaker, has presented at Fortune 100 companies and top ranked hospitals, and has dedicated herself to teaching people how to live the life they imagined through taking control of their powers of choice and self-love.
Daniele serves as the Community Ambassador for Diabetes Daily, as well as a contributing blogger for Diabetes Daily, Insulin Nation, Beyond Type 1, and more. She has also facilitated Camp Nejeda’s Survive and Thrive Bootcamp for adults with type 1 diabetes.
She has been living with type 1 diabetes since 1991, and has gone from obese and clinically depressed for more than 8 years, to thriving and happy as an athlete on her journey. Daniele founded Diabetes Dominator in 2009 with the intention of serving those who are looking for a path to turn a perceived adversity into an advantage through the Diabetes Dominator system and the Six Pillars of Total Health. She helps individuals from all walks of life to think, eat, and move in ways that allow them to achieve a quality of health and life that they previously thought unattainable.
- Website: http://diabetesdominator.com
- YouTube: https://www.youtube.com/subscription_center?add_user=824daniele
- Facebook: https://www.facebook.com/diabetesdominator
- Twitter: @diabetesDomin8r
- Instagram: @diabetesdominator
- LinkedIn: https://www.linkedin.com/in/danielehargenrader
- Book: Unleash Your Inner Diabetes Dominator: How to Use Your Powers of Choice, Self-Love, and Community to Completely Change Your Relationship with Diabetes for the Better on Amazon
Geannie Gray started the blog My Life in Dog Years I in March of this year in an effort to earn a bit of extra income, however, I’ve blogged just for fun & therapy for about fifteen years. I love to write and love helping educate people or share my experiences in an effort to encourage them or just let them know they are not alone.
The name of my blog comes from the hundreds of times I’ve described living with type 1 diabetes as “feeling seven years for every one I live”. I want to let people know that life with diabetes is tough, but that doesn’t mean I have to be sad or bitter. I just have to work a little harder to find the positives and want to encourage others, diabetic or not, to do the same.
My writing covers the whole gamut of my life…marriage, family, faith, AND caring for my health. After over 40 years of living with t1d, I feel the least I can do is encourage others to realize diabetes isn’t a death sentence. It is merely a challenge to which I say, “Bring it!”
SOCIAL MEDIA LINKS:
Facebook profile: http://www.facebook.com/geannieg
FB page: http://www.facebook.com/geannieMLiDY
I strongly believe that diabetes is not a death sentence nor a irremediably obstacle if there is adequate diabetes education. My work in terms of diabetes, and health in general has that focus: health promotion and co responsibility of patients having the correct information. I have a Bachelors Degree in Journalism from the Journalism School Carlos Septién García. Graduated in 1994. Diagnosed with type 1 diabetes in 1991.
In 2002, Gisela coursed the Diploma for Diabetes Educator from the Mexican Diabetes Federation certified by the School Medicine of UNAM (National Autonomous University of Mexico) Time later she began her work at the Mexican Diabetes Federation and continues nowadays as Executive Directo. Diabetes has not been an obstacle for her professional development during more than 20 years, first in her journalism activities and then in civil society tasks.
Gisela leads and hosts a radio show “Con D de Diabetes” every friday from 12 to 13 hours in Radio Education 1060 am and www.radioeducacion.edu.mx This radio show has kept its transmission since 2008.
Hi there! I am Heather and I’ve had diabetes since 2001. My advocacy efforts took flight in 2011, when I founded a mentorship program called Insulliance based at UCSF Benioff Children’s Hospital Oakland. Insulliance mentors are trained to approach diabetes as a team player, rather than an enemy or foe. I constructed the training this way after years of feeling drained by the usual fight/battle terminology permeating through the medical and some advocacy communities. I dreamed up Insulliance for two reasons: 1) because I needed a new narrative that suited me, and 2) because it is what I wish I had access to as a teen navigating life with diabetes. Many advocates in the diabetes community share this revelation: we create what we wish we had. It was through Insulliance that I met Manny Hernandez and began working at the Diabetes Hands Foundation. I loved the work and kept it in mind as I planned my future scholastic endeavors, which brings us to present day!
I am currently a PhD student in the Disability Studies program at University of Illinois at Chicago. As a student, I study aspects of online health community participation within an action research framework. I finished phase-1 data collection at the Diabetes UnConference in Las Vegas, and will continue at the Atlantic City UnConference this fall. I recently started a new blog, called The Chronic Scholar to bring the information of graduate school to the Diabetes Online Community. And last but certainly not least, as I chip away at coursework, I work with DiabetesSisters as Programs Assistant.
I am so excited to meet all of the advocates at this year’s MasterLab!
Ismael studied a Bachelors Degree in Nutrition in College, he is a Diabetes Educator and passionate for his work. He lives and breathes Diabetes. He enjoys taking educational diabetes messages to his patients who do not know about the topic.
Ismael has always liked to support and orientate people with diabetes or people who wish to learn about diabetes. He is a volunteer in several foundations for young adults and kids (such as DIME and Fundación Esperanza among others). He enjoys participating actively as a guide in diabetes camps organized by some of this foundations.
He has accomplished his work as an advocate with enthusiasm and looks for different ways to educate his surroundings and especially help those who require assistance. Ismael has lived the advances in technology and science and is convinced that providing the correct information at the correct time can make enormous differences in people’s decisions. Ismael believes that the best treatment is diabetes education.
Jen Blanchard was diagnosed with Gestational Diabetes in 2010, and required 4 doses of insulin daily. After giving birth to my son, the Diabetes went away, until I was diagnosed with Type 2 in 2013. I am currently using long-acting insulin for treatment.
I consider myself to be a daily advocate in action, as I speak openly about having diabetes in my workplace and in my day-to-day life. I feel that it is not something to hide, or be ashamed of, and I fight stereotypes as a young, fit Type 2.
The focus of my advocacy is on continued insurance coverage of testing supplies and frequent doctor visits for Type 2 patients who have had their diagnosis labelled as “reversed.” Once I made all the changes that my physician told me to, and I got my A1c down to 5.6, I lost all coverage of testing supplies and told to just continue, to do what I was doing, and all would be okay. Well, just one year later, everything was not okay, despite my continued efforts. I should have had access to testing supplies and more frequent doctor visits, even after having “reversed” diabetes.
I’ve been involved with JDRF since its inception in the early 1970’s (when it was JDF). I counseled newly diagnosed teenagers, was active in fundraising and participated in the early JDRF efforts visiting and lobbying on Capitol Hill. Over the past 51 years with T1, I’ve run my own fundraising JDRF walk team, called the Shooting Stars … and as of last year, my 20th year, I’ve raised over $225,000 for diabetes research.
Three years ago, I wrote a book called The Savvy Diabetic: A Survival Guide to help those with diabetes navigate the medical system (including hospitalization, doctor visits, travels and just life with T1. After that, I published a medical organizer binder, to hold medical records, labs, etc., as a go-along on doctor visits.
Since then, I’ve been blogging on www.TheSavvyDiabetic.com, created product review videos and blogs for DiabetesMine, was chosen last year as one of the patient voices at the 2015 DiabetesMine Innovation Summit at Stanford University, participated with JDRF on congressional office visits, Emily Coles’ Medicare CGM online panel, Dexcom’s advocacy efforts and am now working with Insulet on a trial effort for pod coverage by Medicare. I appealed my Medicare CGM claim, up to the 4th level of denial (in which the judge declared that I had proven medical necessity and the importance of the technology but still denied me).
Hello, my name is Jorge Alberto Garduño Basurto I am 27 years old and I am a nutritionist and also a Diabetes Educator. I have more than 3 years as a volunteer in the “Asociación Mexicana de Diabetes en el Estado de Guerrero, A. C.” Where I manage the social media and work in the International Diabetes Federation’s program “Life for a Child” where I work with more than 40 kids and teenagers with type 1 diabetes and try to empower them about their condition, We supply them with glucose meters and test strips to keep a record about their glucose and every month we gather together and make a session about a different topic related with their condition.
As the community manager of the association I try to post different topics related to diabetes, make some images or videos to help people to understand their condition and not to be afraid of it. I share information about nutrition, medicines, how to prevent complications, how to take care of their feet, and many other topics.
Jose Antonio Lopez
Born September 7, 1979, obtained his Civil Engineer degree from Santo Domingo Institute of Technology and earned a Masters in Construction Project Management from Worcester Polytechnic Institute. While he attended his studies in the United States, , Jose Antonio was diagnosed with Type I Diabetes. His doctor in Dominican Republic recommended he attend Joslin Clinic. While attending sessions at Joslin, Jose Antonio recognizes the importance of education in treating diabetes, and understands that access to diabetes education is as important as access to insulin and supplies. Upon returning to his country he notices the great disparity in treatment as well as all the myths and taboos about Diabetes that existed. As a result and wanting to give back some of what he had learned decides to form Fundación Pro-Ayuda a la Educación de Diabéticos, Aprendiendo a Vivir Inc in 2003.
In 2009, AAV opens the first Educational Center for Diabetes patients in Dominican Republic; Today the center receives more than 350 patients per month, it teaches people living with this condition how to have a better quality of life, empowers them to take control of their Diabetes and helps our Dominican youth leaders to serve as agents of change thru various social programs in the organization. The diabetes education camps and other activities we provide in conjunction with our partners Ayuda ( American Youth Understanding Diabetes Abroad ) provide children and youth with Type I diabetes and their families the opportunity to improve many of the basic skills for diabetes management as well as come to terms with other concerns surrounding the diagnosis.
AAV throughout the year holds various programs advocating around the condition that affects 1 out of every 10 Dominicans. Through the 10 years of AAV we have seen how myths have started to be demystified and how the Dominican people have a better understanding of this condition. Under the slogan of #ladiabetesnomedetiene (Diabetes does not stop me) , Ganemosle la Carrera a la Diabetes 2016 will once again advocate for the thousands of Dominicans that live with this condition.
José A. Santos
Jose Santos joined AAV as a Volunteer in 2011. Jose was interested in participating in a non profit org as a volunteer and selected Aprendiendo a Vivir due to his friendship with the president of the organization.
Has participated in multiple advocacy campaigns under Aprendiendo a Vivir’s umbrella of services to the community. Diabetes summer camps, awareness educational sessions for kids & adults in private & public schools as well as in AAV’s educational center are among the activities held throughout each year. For the 5th consecutive will assist in the organization of Ganemosle la Carrera a la Diabetes which is the biggest diabetes awareness campaign in DR, 6 weeks of media tours & publications around Diabetes which ends with a 5/10k race in the Botanical Gardens of Santo Domingo.
Hi, I’m Karen. I was diagnosed with Type 1 diabetes in 1979, at the age of 11. In 2008 I started my diabetes blog, Bitter-Sweet, and became immersed in the diabetes online community. I lead the monthly Virtual PODS support group for DiabetesSisters and am a Diabetes Community Advocacy Foundation board member. I also advocate offline in my home state of CT, volunteering on the Adult Outreach Planning committee for one JDRF chapter and as a former volunteer Advocacy Team Chair and former board member for another chapter.
In 2010 I founded Diabetes Blog Week, an annual event aimed at helping to unite the diabetes online community. This past May, DblogWeek marked it seventh anniversary and continues to grow and evolve, and hopefully helps to spread some awareness about both the bad and the good aspects of diabetes. Because, as my blog tag-line states, I truly believe . . . . life with diabetes isn’t all bad.
Kevin Troutt is a second-generation auctioneer and specializes in conducting benefit auctions nationwide for fundraising organizations. Kevin’s son and only child, Sam was diagnosed with type 1 diabetes at age 11. Sam is now 25. Kevin is passionate about type 1 diabetes research and finding a cure. That’s why his favorite charity to raise money for is JDRF. His other favorite charity is Camp Hodia, a type 1 advocate camp for young people in the northwest. For the last three years this fundraiser has been a phenomenal success for the camp!
He is known for his quick wit, engaging style, stage presences, and his ability to inspire an audience to give “One More Time!”
Along with his heart for non-profit organizations, Kevin’s background as a stage actor, appearing in commercials and industrial videos, numerous years of improv and standup comedy, and a knowledge of how to work a crowd makes him uniquely qualified to entertain and spread passion for his clients’ mission.
Kevin is a member of the Idaho Association of Professional Auctioneers (IAPA) and the National Auctioneers Association (NAA). He has earned the Benefit Auctioneer Specialist (BAS) designation, which less than 550 auctioneers worldwide have achieved. As an avid life long learner, Kevin attends Benefit Auctioneer Specialist trainings, summits, and workshops across the nation.
Kevin lives in Boise, Idaho with his lovely wife, Elaine. Kevin enjoys riding his mountain unicycle on single-track trails. Kevin can be contacted at kevintrouttauctioneer.com.
I have been t1 for 18 years. I am a Patient Ambassador for The Betes Organization and have been working closely with them on their newest project “The Invisible Elephant.” My passions include empowering other PWD’s with tips on how to self advocate and to also bring a new outlook on what living successfully with diabetes looks like. I blog at Confessions of a Deniabetic (https://deniabetic.wordpress.com/) Twitter/Instagram @kimmah81
Validation and encouragement between patients can be the bridge between feeling alone and feeling empowered. I was diagnosed with T1D in 1986 and prior to 2009, diabetes was a lonely, isolating experience for me. Finding the online diabetes community has changed my life — not just alleviating the feeling of, “no one gets what this is like,” but because those shared experiences give me courage, motivation, and desire to do my best when it comes to my own health management.
I began writing a diabetes patient blog called Texting My Pancreas in 2010, and in 2011 I started a community-wide support project called You Can Do This. Patients and their caregivers contribute user-made videos about their lives with diabetes: how they feel, where they struggle, and what they are able to achieve because and in spite of diabetes. We are validating for each other that the add-on experiences, such as complications, depression, and guilt, are manageable. Nothing about diabetes has to be the end of the road. “If they can do this, I can do this too.”
I am a two-time alumni of Stanford University’s Medicine X ePatient program, and delivered an ePatient Ignite! talk in 2014 about the emotional and psychosocial impact of living with diabetes.
Michele Tuck-Ponder blogs at Diabetes While Black. She is new to the health care advocate space, but a veteran of Type 1 and Type 2 diabetes—her mom was a Type 2, her sister a Type 1 and she is pre-diabetic.
Having seen some of the worst that diabetes has to offer, her mission is to help Type 2 folks manage their diabetes and live healthier and happier lives. Diabetes While Black is focused on the interests and issues confronting African Americans with Type 2 because they have diabetes in numbers disproportionate to their percentage in the population and suffer from some of the most severe conditions as a result of the disease. She is interested in helping people live better with diabetes, promoting public policy to address the disease, and advocating for more research that addresses racial disparities in identifying treatment for better outcomes for black folks.
My name is Melissa Cipriani, and I am from Caracas, Venezuela. I am a Public Interpreter, and audiovisual material (subtitles) translator.
Thirteen years ago my life was touched by Type 1 diabetes, when my only child, who at the time was eight years old, was diagnosed. From that time on, my life changed. Our normality was never the same again. We had to learn to inject insulin, count carbohydrates, and interpret the numbers the meter read, and many other things. Thanks to the internet I was able to learn things that nobody tells us, I discovered that I was not alone, and that there were many persons in the virtual world that shared their experiences and were willing to help other people to walk in this path called Type 1 diabetes. The truth was that mostly all pages and websites were in English, and thanks to my proficiency in both languages I was able to absorb lots of information.
With time I decided, in a therapeutically way, to begin writing a blog (in Spanish), that really helped me to vent, but it also gave me the opportunity of sharing my experiences with my daughter’s diabetes treatment with other people who were in the same condition as we were. My main focus, my family’s main focus, has always been that this intruder was not going to limit my daughter’s life. Today, when she’s almost 22-years-old, I can say that she is a confident young lady and that diabetes never meant a hindrance to achieve her goals; she has done what she has desired, she travelled alone, practices sports and dances. All of this represents a challenge, but it’s nothing that cannot be achieved if we educate ourselves and learn each day more about this condition.
At the present moment, given the crisis we are experiencing in my home country, Venezuela, my main goal is to help those less fortunate in obtaining the supplies needed for their treatment. We are gathering donations from other countries. It is not easy, but we have been able to help people in need. If we can positively touch the life of one person, that represents a great satisfaction.
The path has not always being easy, and in spite of all the ups and downs, because it’s not all a bed of roses, we keep a positive focus on things.
“God chooses his best warriors for his toughest battles”.
Meri is the mother to four boys, three of which have Type 1 Diabetes. Her three boys were diagnosed as babies and have been living with Diabetes for 9, 10, and 18 years respectively.
Meri began blogging 7 years ago to reach out to other families that have children with diabetes, giving hope and perspective to this all encompassing disease. Meri has worked closely with JDRF, raising money and working as mentor to those families with newly diagnosed children. She has traveled to forums throughout the United States advocating for children and adolescents with Type 1, and has been published by magazines and websites alike.
Her motto is: “Love your best. Hope your best. Try your best. You can’t do better than your best.”
Mike Hoskins has been living with type 1 diabetes since March 1984 when he was five years old, the same young age that his mom was also diagnosed with T1D decades before. After experiencing some complications and feeling alone, I found the Diabetes Online Community in 2005 and began connecting with other diabetes bloggers and using my own personal The Diabetic’s Corner Booth blog to share my story and advocate.
With more than a dozen years of print and online journalism at newspapers in Michigan and Indiana, I joined DiabetesMine in April 2012 as the full-time managing editor where I coordinate the editorial coverage seven days a week. Through the years, I’ve participated in diabetes advocacy through company-sponsored forums and events along with JDRF, ADA, and being a board member of the Diabetes Youth Foundation of Indiana.
I was diagnosed with type one Diabetes in January, 1984, when I was 16. I was 5’10” tall and went down from 150 lbs to 120 lbs. My parents thought I was on drugs and I still remember how much better I felt once I was diagnosed and treated, with R and N in those days.
I then went off to college, played in rock bands and had a fun time! 2:00 AM testing at keggers worked out great and, since people passing out wasn’t all that uncommon in these circles, I didn’t perhaps feel stigmatized when hypos happened. Later, I kept at it and managed to avoid going to the doctor for 5-10 years. Eventually, my doctor “fired” me and I had to find a new one quickly to get supplies. I found a great GP who helped me a lot and was shocked that my A1C was 5.8 at my first appointment. The downside to aggressive dosing and a serious potato chip addiction was that I’d gained quite a bit of weight, peaking at 275 pounds in 2004.
I decided to start working out, mentioning it to my doctor in passing, and eating less. My friend taught Tae Kwon Do classes and, by then I had a 6 year old daughter so I dragged her along and we started martial arts. I also started walking around the neighborhood and noticed impact on my BG that I’d also include in attacks on elevated BG. I saw results and started working out hard 5-6 days/ week, running and cycling too. My weight dropped but, since I had no clue what I was doing with diabetes, my A1C went up to 7.2, 7.7, I had to do something different so I decided to try an insulin pump. It worked great! I earned my black belt and have since run 2x marathons, 9x 1/2 marathons and ridden the Tour de Cure twice to support the ADA. My pump also led me to the DOC and that has led me to MasterLab! I’ve posted at Tudiabetes.org/forum as AcidRock23 since 2009 and have helped DHF locally in Chicago in 2013. I’ve also attended the Diabetes UnConference twice, participate in a Chicago-centered FB group with 550+ members and also have a local group of friends who meet for dinner. I feel all over the place but I like being there.
I rarely blog and mostly “hang out” however my advocacy interests are 1) Blue Monday the idea that people with diabetes who can commit to take Monday, November 14th off and celebrate World Diabetes Day together. 2) Investigating conflicts of interest in the health insurance industry and governmental agencies such as Medicare and how these conflicts infringes upon civil rights of people with diabetes.
Diagnosed in 2001 I’m not new to diabetes. I am,however, quite new to the DOC and diabetes advocacy!
I have a deep love and appreciation for Diabetes Hands Foundation’s statement “No one living with diabetes should feel alone.” Growing up in a small town, I rarely met fellow diabetics and thus grew up feeling very alone with my disease!
A few years ago I took to Google -and even Craigslist -searching for fellow diabetics in my area to hang out with – I found nothing! It wasn’t until my brother subscribed me to a diabetes newsletter and I saw the ads for a “Diabetes Unconfrence” that I finally got excited!
I met many friends and was told about the “DOC” and talked to people about advocacy it’s been a slow road but now I am here, and very excited to meet you all in person!
Paola Ortega Reyes
Paola is 36 years old. She has been living with type 1 diabetes for 29 years. She studied a Bachelors degree in communications at Universidad Iberoamericana in Mexico City. Her work as an advocate began since she was very young following the example of her mother who founded the Mexican Diabetes Association in Mexico City more than 25 years ago and then worked for the Mexican Diabetes Federation. Paola was a volunteer at a very young age and was able to participate in health events and in worldwide and national conferences. She was able and proud to participate in Tonalli, a camp for type 1 children. There, she was able to meet many others with type 1 diabetes and she learnt about diabetes.
6 years ago, Paola began her professional work at AMD leading the Communication and Social Proyects and she was then able to visit communities where there is no diabetes education or information. She worked closely to CDHDF (Human Rights Commission for Federal District). Paola has been invited as speaker in Universities such as ITAM and UNAM as well as in communities and organizations. After some years, Paola became coordinator for the Citizen Network for Type 1 Diabetes Rights.
Nowadays, Paola works as an independent advocate and is dedicated to help and guide a group of type 1 diabetes moms. There, she focuses her work in human rights.
Perry Gee has been a registered nurse for 30 years and has PhD in Nursing Science and Health-care Leadership with an emphasis in consumer health informatics from the University of California, Davis. Perry has a medical surgical, critical care, flight and home care nursing clinical background as well as over 15 years’ experience as a Clinical Informatics Specialist and educator.
His health informatics experience includes work in both acute care and ambulatory care environments. Perry is currently a Nurse Scientist for Dignity Health with a focus on research involving patient engagement. His current research interests are in the area of diabetes self-management support, consumer health informatics, e-patients, eHealth, on-line health communities, personal health records, and the use of health technologies for chronic illness self-management support. Perry is also adjunct faculty at the University of California, Davis and the University of Kansas.
I was diagnosed with Type 1 diabetes at the age of 2 in 1974. Living with diabetes is not easy, yet I try hard not to let it stop me from accomplishing my goals..If anything I think it makes me try harder! Originally from New Jersey, I’ve been living the the Boston area for more years than I care to admit.
In 2015 I became an ambassador for MiniMed,and received a scholarship through them to attend #masterlab 2015. The lessons I learned at #masterlab helped jump start my advocacy work and I am grateful for it all. I look forward to what is to come!
My current advocacy work is based around local support and outreach for adults with type 1 diabetes. Diabetes is more than insulin doses and carb counting. The emotional roller coaster is just as hard to manage as the disease itself and having people to connect with makes it all a little easier.
I am a Type 3 and live with my husband, two children and two dogs in sunny San Diego, California. My daughter was diagnosed with Type 1 Diabetes and Celiac in 2013 at the age of 8. The resulting sleep deprivation was at least partially responsible for the reason I started blogging about our T1D and gluten-free life. I believe in the power of telling an honest story about our family’s journey to bring greater awareness of T1D and celiac, and to make this world a more friendly place for my daughter and her fellow pancreas- and gluten-challenged counterparts.
I regularly participate in various diabetes advocacy and education activities on-line and in-person, including JDRF One Walk, TCOYD conferences, annual Diabetes Blog Week, and Diabetes awareness month. Last year I conducted a so-called “Awareness Project”, where for a week I tried to replicate my daughter’s routine, including counting carbs, checking blood sugar, wearing Dexcom sensor and Omnipod pod, and adhering to a strict gluten-free diet. This year, I am fundraising as a member of endurance team for Riding on Insulin (ROI) – an organization that provides ski/snowboard/mountain bike camps for kids and teens with T1D. I have committed to running at least three half-marathons and raising no less than $1500 by the end of the year.
I blog at firstname.lastname@example.org and occasionally write guest posts for Insulin Nation and Diabetes Mine. You can also find me on Twitter @t1dandgf, and on Facebook @T1Dandglutenfree. You can check out my fundraising page for ROI @https://www.classy.org/
I was diagnosed with diabetes at age 17 and Rheumatoid Arthritis at age 43. I have been married to Sheryl for 38 years, and we have two wonderful sons and three magnificent grandchildren (if you like I will tell you all about them). I hold a BS and MS in Public Affairs from Indiana University and an Ed.D from Nova Southeastern University. Sheryl and I reside in Noblesville, IN
During my professional career, I was involved for 16 years with City Government, serving as Director of Development, and City Controller. I was then Director of Business for two Indiana school districts. I was also the Executive Director of Personnel for a school district. During my career, I oversaw the building of numerous public works projects including 5 schools, 25 miles of sewers and 98 miles of streets. I also oversaw economic development projects totaling more than 1.2 billion dollars. I have been Chief Negotiator for management while bargaining with Police Officers, Firefighters, AFSCME and two Teacher Associations.
I am currently an Ambassador with “the Betes organization”, I participate with TUDiabetes where I help with the blog page, and I conduct some live interviews. I have been a member at TUDiabetes since 2009. I am a member of the American Diabetes Association and the American Arthritis Association. I have been a guest speaker for the American Diabetes Association. I am currently part of Arthritis Patient Partners in Research; I manage RABlog week, and I was a participant at HealtheVocies 2016.
My son was diagnosed with type 1 diabetes 11 years ago at the age of five; I am now the founder/president of Unidos por los niños Diabetes Tipo 1 Tijuana, a type one diabetes nonprofit organization, the first and only one of its kind in my community. Therefore, my contact and efforts of advocacy are constant.
Our main focus is to provide moral support to the families that arrive, either recently diagnosed or with years of living with the condition and we also focus on diabetes education, a priority to us. We have meetings twice a month in which we teach classes and workshops that are given by medical care providers, mainly endocrinologists, diabetes educators as well as psychologist and dietitians, in amongst others.
Rosy de Prado
I am Rosy De Prado. I have been living with diabetes since I was little through the experience of my Dad, and then a learned some of the things you should and should not do living with diabetes through the experience of two of my brothers. One of them, Ricardo had difficult times since he got blind and then had kidney failure. I was diagnosed in 1987 after my first baby was born. I had difficult times at the beginning because there were not enough information about diabetes and I got pregnant some months later. I almost died with this second delivery and so did my daughter. That was the time when I decided to begin a self-advocacy for a better health care and to look for new ideas, treatments, alternative medicine, etc.
I got a degree in Psychology and then a Master degree in Family Therapy. My Master’s research was about the family dynamics, strengths, barriers and support that the parents of an adolescent with diabetes experience. That research lead me to a project where I could combine my knowledge about Family therapy, Narrative Therapy, Community Approach and peer education in the creation of a workshop for Families with kids and teens that live with diabetes.
I love to tell and write stories for kids, so I wrote a story inspired on my Therapy consultants about a dragon that is called PUK. He/she suddenly appears in Victor’s life and he starts to know how to tame Puk with the help of his Friend.
MODIAJ (managing diabetes for youth and adults) is a 12 session workshop where kids, teens and their parents are invited to share their knowledge of “diabetes tamers” and learn additional ideas. Modiaj aims to be the starting point that could lead to the organization of support groups of learning and advocacy in diabetes . We have opened workshops in Mexico City, Toluca, Guadalajara, Tabasco, Sinaloa (Los Mochis). We are searching for resources to translate the workshop material into English and begin a group in Santa Ana, California where I actually work.
Stephen Shaul has been living with Type 1 diabetes since 1991. Since April 2012, he has been writer of the diabetes blog Happy Medium (http://happy-medium.net), and since then, has covered a number of diabetes-related subjects, including participation in clinical trials, living a week gluten free as if he were newly diagnosed with celiac disease, and the complex relationship between patients, corporate interests, and government entities.
In November 2013, Stephen began awarding medals to athletes living with diabetes who meet their athletic goals. Since July 2015, he has been host of the Diabetes By The Numbers podcast, where he interviews newsmakers in the diabetes community. In 2016, Stephen became a facilitator for the Diabetes UnConference. He is also a part-time moderator of the popular weekly #DSMA Twitter chat (@StephenSType1).
Stephen advocates for people with diabetes everywhere through support of legislation designed to reduce the cost, improve access, and ensure the safety of people living with diabetes, and through encouraging others with the phrase “I support you… no conditions”.
Sue Rericha was diagnosed with Type 2 diabetes in March 2008 after having gestational diabetes five times (1993-2004). She has been involved in online advocacy through her blog (diabetesramblings.com), Facebook (www.facebook.com/DiabetesRamblings), and Twitter (@RfamsRamblings). Sue is also a contributing member of the collaborative blog, The Type 2 Experience (thetype2experience.com). Other advocacy outlets have included the American Diabetes Association’s Step Out: Walk to Stop Diabetes for numerous years, 2ruth In Numbers (2016), Heath eVoices (2016), and MasterLab (2014, 2015).
Besides her involvement in diabetes advocacy, Sue is married to her high school sweetheart and the proud mother of five children. She currently teaches first grade in a small rural school district and recently earned an MSEd in reading with a Reading Specialist endorsement. Education and empowerment are very important to Sue professionally and personally. Taking a pro-active approach to her health has allowed her to learn more about diabetes and her other health issues, while also learning more about other medical conditions through her network of online advocate connections. She feels called to help educate people about diabetes, even when she’d like to tell them to mind their own business.
When our 7-year-old son Liam was diagnosed with type 1 diabetes in October 2010, we promised him that he would be able to continue doing all of things he loved. We were determined that this diagnosis would not limit his choices in life. To that end, we had him back climbing in the rock gym three days after he was diagnosed. We were struggling with keeping his blood sugar in a safe range while he sat on the couch. We had no idea how to keep him safe while climbing. On that first day, his blood sugar dropped from 150 to 50 after just a few minutes of climbing. I wanted to scoop him up, take him home, and let him play video games for the rest of his life. Instead, I sat with him on the gym floor and fed him glucose tabs until his blood sugar level was once again safe. I was not going to let his medical condition rob him of the chance to pursue his passion. I also knew that it was going to be critical for him to remain physically active to help prevent the long-term consequences of type 1 diabetes.
Three years ago, my husband and I decided that we wanted to do what we could to encourage and empower other kids with type 1 diabetes to embrace an active lifestyle. We also saw a need for opportunities for those affected by type 1 diabetes to come together for support and a stronger sense of community. As a result, we founded Rock Type 1 (rocktype1, rocktype1, and @rocktype1 on Instagram and Twitter). We host three events each year for the type 1 diabetes community: an indoor climbing event that serves as an introduction to climbing, an afternoon of hiking and climbing at Lincoln Woods State Park, Lincoln, RI, and a weekend of camping and climbing in the White Mountains of NH. Each year, our events become more popular, and we draw participants from all over New England. From the inception of Rock Type 1, we were determined to offer these events at no charge to the type 1 diabetes community. Many of our participants come from families whose finances are already stretched due to the economic toll of managing this condition. We want our events to be completely accessible to the type 1 diabetes community. We are also a completely volunteer organization and are doing this work because we believe very strongly that we are making a difference in participants’ lives. I was reminded of why we do this work after our most recent event. We received a letter from an 11 year old who was diagnosed a year ago. She wrote to thank us for hosting the event and to let us know how much she had enjoyed it. She also told us that the event “made me want to be more active.” Her mother also wrote to tell us that her daughter does not usually test her blood sugar and inject insulin in front of anyone except immediate family members. However, at our event, she felt comfortable sitting on a bench and testing and treating her blood sugar. In addition, the girl’s mother met the parent of the only other child in her daughter’s school who has type 1 diabetes at our event and was very grateful to have had the opportunity to make that connection.
Mom of 3 kids with diabetes, school teacher, veteran, JDRF volunteer (some years more active than others), and blogger (some years more active than others).
My degrees in education and communication helped when I was most active with the Austin, TX JDRF chapter and worked with the JDRF Kids Walk program. I would go into elementary schools and talk to each grade level about diabetes and encourage them to ask family and friends to sponsor them in a school walk to win prizes. That was my favorite advocacy role, teaching kids about diabetes and then returning to count money that will one day help end diabetes.
Since I left TX I haven’t found a program quite so well developed and I miss the public speaking. For now I content myself with sharing tidbits of information about diabetes on my personal FB page and sharing more in depth stories, calls to action, and advice on my blog and blog FB page. My favorite advocacy objectives are helping others understand that regardless of the type of diabetes they or someone they love has, we are all in the same tribe and need each other to improve access to health care and technology, advance research, stop misinformation, educate the public, and increase the awareness of diabetes sidekicks such as, mental health conditions, eating disorders, and the ever present complications that make managing diabetes that much more difficult.
Feeling as though I’m not doing enough, or am enough, and am worried I’ll feel like an imposter among so many, doing so much. Wondering if that is what many advocates feel.
Can’t wait to meet everyone.
Yolanda Rivera Cabrera
My name is Yolanda Rivera Cabrera. I was born december 7 1972 in San Juan Puerto Rico. I am passionate for Art, Movies and cats. I studied a Bachelors Degree in Social Sciences and major in Psychology in 1990. In 1983 I was diagnosed with type 1 diabetes. Two years ago I started volunteering with the Sugar Free Kids Foundation in Ponce Puerto Rico. My job consists on moderating a whatsapp group where parents of type 1 diabetes kids send their questions and thoughts. I also represent the Foundation in events held by the WHO and Health Department and other agencies that promote diabetes education and well being among those with type 1 diabetes in my country.
I collaborate in the publication of information regarding Diabetes in our social media channels and my own webpage. I started using twitter a year ago under the name Yo Soy Tipo 1 (I am type 1), I might try to open my own facebook page pretty soon. Nowadays we work in helping type 1 diabetes adults in getting their rights supported and respected in terms of medical equipment (insuiln pumps and test strips) as per insurances no person above the age 21 can be covered.