Tag Archives: NIH

Type 1 Research Update

Sunday, March 13, 2011

What an awesome thing the internet and streaming video are!  After the Awards Dinner last night,  thanks to live streaming video,  I was able to sit in my room and watch my Type 1 grandson play the second game of a double header at his future college in Stockton, CA!  Of course it probably wasn’t the smartest thing for me to stay up til 1 am and then have to set my clock forward for daylight savings time and then get up at 6 the next morning!  But it was so worth it!!

So now, 5 hours later, it was 7 am,  we are eating breakfast on the 16th floor of the Sheraton, watching the sun rise over our nation’s capitol and getting ready for another day filled with information, learning, encouragement and hope for a better future for all Type 1 Diabetics and their loved ones!

Our first order of business was to go around the room and  all 150+ of us, introduced ourselves and shared what our connection to diabetes was and why we had become advocates.   It does not matter what the connection to Type 1 is, each one of  our stories are personal and emotional and the desire for a cure is what drives us all.   After all the introductions had been made, we all took a deep breath and were ready to get to work!

The first presentation of the day was from Judith E Fradkin, M.D., who is the Director, Division of Diabetes, Endocrinology and Metabolic Diseases, National Institute of Diabetes and Digestiveand Kidney Diseases, National Institute of Health (NIH) http://www2.niddk.nih.govand Richard A. Insel, M.D. who is JDRF’s Chief Scientific Officer.

They assured us that  both the NIH and JDRF share the common goal of better treatments and a cure for Type 1 Diabetes!  They explained to us that JDRF and NIH have complementary research programs to ensure funds address key gaps.  They also explained where those funds for this critical research come from.

  • JDRF research funds are raised by families affected by Type 1 Diabetes from across the nation and the world
  • NIH research funds come from 2 sources: Annual Congressional Appropriations and the Special Diabetes Program, which since 1998 has funded over $1.9 billion in Type 1 Research

They reviewed the progress that has been made at the many stages of Type 1 Diabetes and talked about the successes and the  future of research in these areas.

  • Prevention onset of autoimmunity
  • Halting of the autoimmune attack
  • Preserving of beta cells
  • Improvement of glucose control
  • Restoring of beta cell function
  • Prevention, arresting and reversing of complications

They shared with us the fact that the  diagnosis of Type 1 Diabetes is increasing at an alarming rate.  It is doubling every 20 years.  There is a 5.5% increase in Type 1 in children from 0 to 4 years old.  They also told us that in all children diagnosed with diabetes under the age of 10 have Type 1.

And they concluded the morning’s presentation by sharing the progress that both the NIH and JDRF funded research has made and what areas they believe hold the most promise for prevention, better management, reversal and ultimately the cure.

  • There are 7 clinical trials involving Islet transplantation
  • Research is exploring micro and macro encapsulation
  • Beta Cell Regeneration and the possibility of regeneration without Beta Cells
  • New drugs and devices to improve glucose control
  • Diabetic Retinopathy Clinical Research and success in reversal of a form of retinopathy
  • Artificial Pancreas Project

Thanks to research in Type 1 Diabetes, complications from this horrible disease have been drastically reduced.  Eye disease has been reduced 76%, kidney disease has been reduced 50%, nerve disease has been reduced 60% and cardiovascular disease has been reduce 57%.  People with Type 1 Diabetes are living longer, healthier lives.

Even though the cure we all so desperately want and need, does not appear to be right around the corner, we do have the comfort in knowing that, because of this research,  our loved ones will live longer, healthier lives until their cure is found!

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JDRF Government Relations 101

Saturday, March 12, 2011

My husband Bob and I  arrived in DC and got checked in to the Sheraton National Hotel where we spent the next 4 days with over 150 staff and volunteer advocates.  The view from  our room was absolutely breathtaking!  We could see the Capitol Building, the Washington Monument, the Airforce Memorial, Arlington Cemetery and everything else in between.  We are so fortunate to live in the USA!

Because response to Government Day(s) had been so tremendous, there was not room for Bob to attend the sessions.  We had breakfast with our daughter-in-law’s brother, who is attending George Mason University,  and then they went off to explore DC  and I met with my Grassroots leader, Glenn Weber.   We talked about our goals and discussed strategies for our upcoming visits on the hill with our members of congress.

Our first presentation was  Government Relations 101.   First and foremost the number one goal of JDRF Government Relations is to advocate for research to find a cure for Type 1 Diabetes and its complications.   We celebrated Congress’ funding of $300 million for Type 1 Research along with other legislation that was passed that will impact Diabetes.

We then discussed what our Government Relations Goals are for the immediate future.

  • Continue to garner support for the Special Diabetes Program
  • Accelerate availability of an Artificial Pancreas
  • Support efforts to secure additional funds for National Institute of Health (NIH)
  • Expand embryonic stem cell research policy

We talked about  Grassroots Activities and Goals

Our first presentation was complete and we were off to freshen up before a reception and the Advocacy Awards Dinner!

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