Misdiagnosis is a big issue with type 1 diabetes, as it’s often overlooked or taken for some other minor ailment before the ugly consequences of that mistake take hold. That’s why it’s good to see a new grassroots non-profit formed to raise awareness about just this issue: a group calling itself EASE T1D.
The name is an acronym for Education, Awareness, Support and Empowerment, and this California-based non-profit is the joint effort of three moms of kids with type 1: Debbie George, Robyn Lopez and Michelle Thornburg. The trio says they recognized “areas of significant need” in D-awareness and joined forces to apply their knowledge and passion in an effort to “EASE” T1D.
They’ve created what appears to be a leading model for local community action — just digging in and getting things done right where they live.
We talked to one of the founding D-Moms, Debbie George, recently about what this group is all about and how it differs from the many other awareness-raising groups already on the scene:
DM) Debbie, can you start by telling us a bit about yourself and the D-Moms who formed this group?
DG)All three of us have children who were placed in real danger by being misdiagnosed. My son Dylan was diagnosed when he was 25 months old. He was misdiagnosed twice resulting in collapsed veins from dehydration, a BG of 538 and a four-day hospital stay. This is why raising awareness to the signs and symptoms is so important to me! Dylan is now almost 14 and is thriving. He is a smart (straight-A student) funny, athletic kid who loves to play baseball and snowboard. He enjoys doing just about anything outdoors; T1D won’t slow him down. He is my superhero!
Michelle’s daughter Sierra is force of nature. She is athletic, smart and has more energy than most of us. She has no fear and lets nothing stop her from achieving her goals. Sierra was diagnosed T1D at the age of 15 months old and then three years later she was also diagnosed with Celiac Disease. Despite her medical challenges, Sierra continues to educate newly diagnosed T1D’s as well as school staff and parents. She wants to go to college on a volleyball and academic scholarship, start rock climbing, ride horses and advocate for all T1Ds. Sierra is just 11 years old but you will undoubtedly see more of this T1D hero!
And Robyn’s daughter Emma is now 14 years old and was diagnosed with T1D in June of 2010 at the age of 9. She loves dogs and hopes to operate a dog rescue organization one day. She is a straight-A student and is very involved in activities such as Color Guard, Art Club, and volunteering regularly in our community. Her strength and courage managing her diabetes is very inspiring.
What made you decide to start your own non-profit?
EASE T1D is committed to bringing global awareness on type 1 diabetes through educational materials, national ad campaigns and sponsoring kids for diabetes camp, as well as donating funds to find the much-needed cure. Having a non-profit status helps us to raise these funds to achieve our mission.
What have you accomplished so far?
The mission of EASE T1D is to bring:
- EDUCATION to medical professionals, school staff, and the general public about how to treat and care for children with type 1 diabetes.
- AWARENESS on the differences between type 1 and type 2 diabetes as well as support the implementation of legislation on the signs and symptoms of type 1 diabetes to parents at all well baby/child care visits, in an effort to prevent misdiagnosis.
- SUPPORT our T1D community through the sharing of resources, family events and personal experiences.
- EMPOWERMENT to families through support, knowledge, and unity.
We feel there are significant voids in our T1D community that must be met. For example, we need medical professionals and school staff to be better educated on type 1 diabetes in order to care for our children. There also needs to be a better understanding of the differences between type 1 and type 2 diabetes. We believe with community involvement, together, we can make change happen!
Our group of course gains nothing by competing with other T1D organizations. But don’t forget that legislation is state-by-state. Our organization exists because we are dedicated to addressing a multitude of issues that others may have no time or interest to pursue. For example, not every individual or organization may feel it plausible or necessary to address their local school officials or medical professionals about T1D screening. We are prepared to have these complicated conversations to provide a better understanding of this misunderstood disease to help ensure the safety of all of our children.
We’re very aware of the very important advocacy efforts of Tom Karlya and Get Diabetes Right, for one. We have communicated with Tom in regard to implementing similar “Reegan’s Rule” legislation in California. Tom has been very helpful and we appreciate his knowledge and insight.
Where are you in getting this diabetes legislation passed in your state?
EASE T1D has begun the legislative process to enact in California, North Carolina’s Reegan’s Rule, which calls for parent education on the signs and symptoms of type 1 diabetes at well-child care visits from birth to age 5 years, in an effort to prevent misdiagnosis. We are also asking to screen for elevated blood glucose levels when children present flu-like symptoms with a finger stick test. We have met with both California Assemblyman Eric Linder and Senator Richard Roth’s representatives in hopes of having this legislation authored. We have another meeting set with Senator Roth himself on December 16th.
Are you focused only on California, or do you have plans to expand beyond the West Coast?
EASE T1D’s base is in Southern California, however, we are spreading awareness globally through social media.
Beyond the Reegan’s Rule work, what’s your plan for raising T1D awareness?
We’re currently in the process of distributing our recently approved Type 1 Diabetes Awareness flyer to a local school district. Our hope is to get this flyer distributed nationwide through social media.
We’ve also begun speaking on T1D and how our children need better care at schools at local groups such as meetingsof UNITY (United Neighbors Involving Today’s Youth which is a Corona, CA-based social action coalition), at Kiwanis Club meetings, and at local PTA Counsel Meetings, which include our School District’s Superintendent as well as school principals and administrators. Our awareness flyer was recently approved to be distributed to all K-6 schools in our Corona/Norco School District in an effort to raise awareness on the signs and symptoms of T1D but also inform people of just what T1D is.
What about your diabetes camp sponsorships?
EASE T1D has personal connections to Camp Conrad Chinook and The Diabetic Youth Families of California (DYF). The camp experience is one we feel children benefit from greatly. As our organization grows, we will expand the number of camps we will sponsor.
You mentioned that you support cure research, too?
EASE T1D does support cure research, in particular the work of Dr. Denise Faustman. However, our main focus as stated in our mission is on awareness and educational materials on T1D. The percentage donated will vary depending upon funds raised.
Many in the diabetes advocacy and patient community have started pushing for a more united advocacy front that does not distinguish the types as much. What do you say about that?
EASE T1D’s focus is on type 1 diabetes awareness.
Still, sometimes the language we use appears to imply those with type 2 are automatically at fault… Can’t we do better?
I’m sure you would agree how crucial it is for the general public to understand the differences between type 1 and type 2 diabetes. As you know, type 2 diabetes has many contributing factors and their own share of misconceptions, none of which we perpetuate. Diabetes is not a single disease, as there are varying types which are very different. Type 1 diabetes is on the rise and we believe it deserves recognition. If the distinction between the two is not made, we fear we will see many more blue candles surfacing in our Facebook news feeds and the funds needed to find a cure will be lost. It is difficult to raise money for a disease which is nearly invisible. EASE T1D is a small organization committed to doing big things in our community. Our T1D community is like family and without each others’ support, none of this is possible.
What’s next for EASE T1D?
We are just getting started. We use social media to raise awareness and would eventually like to have a T1D commercial — that is in the future of course. We also plan to increase our donations to camps, because having the camp experience for your child is like none other and builds bonds with families who experience the same struggles you do daily. As far as donating for a cure, we believe in Dr. Denise Faustman who is in Phase II Clinical Trials for the BCG Vaccine. Please visit our website at www.EASET1D.org for more information.
We love your passion, Ladies. Looking forward to seeing how you move forward with EASE T1D.