March 22, 2004

Congressman Steven LaTourette (OH 14) with Oliver and Stephanie

The group thanked Representative LaTourette for meeting with them and for co-sponsoring the Pancreatic Islet Cell Transplantation Act of 2003, for his support of the Special Diabetes Program and for being a member of the Congressional Diabetes Caucus.

 They also expressed their concern with the current policy regarding stem cell research and asked him to sign onto the Castle/DeGette/Cunningham/Dooley Stem Cell Letter to the President.  The group also asked Representative LaTourette to support a 10% increase in NIH funding. He said that he was working on the hard task of allocating the funds available to the best possible sources. He said that he would sign the Castle letter to the President.

 Stephanie talked to Representative LaTourette about the day she was diagnosed, how she went directly to the hospital and couldn’t believe that she would have to get shots for the rest of her life. She said that it was the worst day of her life. She gave him a booklet that she developed to hand out at the beginning of the school year explaining to her classmates what diabetes is and how they couldn’t catch it from her. She also gave him her business card and asked him to visit her web page. She showed him her insulin pump and told him that she has to wear that to stay alive and told him about having to test her blood sugar by sticking a needle in her finger 7-10 times a day. She said that although she looks like a normal kid from the outside, she needs a cure soon. Stephanie asked Representative LaTourette to promise to remember her when he was making legislative decisions regarding funding for a cure for diabetes. LaTourette said that he remembered Stephanie meeting with his assistant in Washington for Children’s Congress last summer and leaving her scrapbook for him.

 Oliver told Representative LaTourette that he was diagnosed less than 2 months ago. He said the day he was diagnosed the first thing he thought of was that he couldn’t have Coke any longer. He said that he went right from the doctor’s office to the hospital to learn how to give himself shots and test his blood by poking needles into his finger. He said that the thing he hates most about having diabetes is not being able to do the things he wants to do when he wants to do them. He said that he feels restrained from doing everything he used to do. Oliver asked Representative LaTourette to promise to remember him when he has a chance to find a cure for diabetes. Representative LaTourette said he would remember Oliver. Oliver gave Representative LaTourette a letter explaining how he feels about having diabetes with his picture on it.

 Representative LaTourette thanked the children for coming to talk to him and for the cards and pictures that they made and left for him. He told them that he would remember them. The group left the JDRF Promise To Remember Me card with pictures of the children with the Congressman.

December 3, 2003

We met with Senator Voinovich's District Director, Heather in his Cleveland office. Heather was very nice and listened to our story. Stephanie told Heather about the day she was diagnosed and how it was the worst day of her life. She also asked heather to thank Senator Voinovich for meeting with her in Washington DC last summer when she was there for Children's Congress. Stephanie left a booklet that she made to help her friends understand what juvenile diabetes is. She also left a copy of an article that was written in the newspaper about her visit with the Senator in DC.

Celine showed Heather a picture of when she asked Santa for money to find a cure and Santa sent it to her. Celine then donated it to JDRF to help find a cure. Celine brought Rufus the diabetic bear to show Heather.

Heather said that as a parent she worries about her children and asked what signs she should be looking for. Wendy and Donna gave her the symptoms that they saw in their daughters.

Both girls asked Heather to Promise To Remember them when she is talking to Senator Voinovich about legislative decisions that would help find a cure for diabetes.

Congressman Tim Ryan (OH 17)

December 16, 2003

Luis Santiago, Chelsey Santiago, (in Chair)-Daniel Rice, Stephanie Treubig, Congressman Tim Ryan

Luis and Cathy Santiago Chelsey age 12 diagnosed at age 9, brother Luis III age 14 (non-diabetic)

Matt Rice and Daniel age 8 diagnosed at age 5

Donna Treubig and Stephanie age 10 diagnosed at age 7

Warren, OH

The group thanked Congressman Ryan for signing the House Conference Committee of Labor HHS letter to increased NIH funding. We also expressed our concern with the current policy regarding stem cell research and asked him to support all legislation that would expand that field. He said that he would be watching for any legislation regarding that issue. After explaining islet transplantation to the Congressman the group asked him to co-sponsor the Pancreatic Islet Cell Transplantation Act (H.R. 1068). Congressman Ryan immediately put in a call to his Washington DC office to make sure he was on that co-sponsor list of that bill. 

 Stephanie talked to Congressman Ryan about the day she was diagnosed, how she went directly to the hospital and couldn’t believe that she would have to get shots for the rest of her life. She said that it was the worst day of her life. She gave him a booklet that she developed to hand out at the beginning of the school year explaining to her classmates what diabetes is and how they couldn’t catch it from her. She showed him her insulin pump and told him that she has to wear that to stay alive and told him about having to test her blood sugar by sticking a needle in her finger. Ryan asked her how she felt and she said that she felt fine right now but that there are many times each day that she doesn’t feel fine. She said that although she looks like a normal kid from the outside, she needs a cure soon. Stephanie asked Ryan to promise to remember her when he was making legislative decisions regarding funding for a cure for diabetes. Ryan said that he would certainly remember her.

 Daniel Rice shared a card that he made for Congressman Ryan that had pictures of all the sports that Daniel likes to play on it. Daniel told Ryan about the difficulty in controlling his blood sugar when he is playing sports.  In football, Daniel tests before the game and at each quarter.  In baseball, he checks between innings when he is pitching.  It is very frustrating is when he checks his blood sugar right before the opening kickoff and he is 52, it is tough to explain to the coach that the starting quarterback has to wait a few minutes for his sugar to rise before he can play.  Daniel said that his Mom and Dad worry a lot when he is with his friends because he and his friends always end up wrestling or playing tag and Daniel always seems to go low.  Ryan asked Daniel how he felt when his blood sugar was low and Daniel said he feels shaky, scared and bad.

 Chelsey showed Congressman Ryan pictures of her at the JDRF Walk to Cure Diabetes and a newspaper article of when she met 1999 Miss America Nichole Johnson. Chelsey said that there are times when she doesn’t know why her blood sugar is out of control. One day last month she was over 300 all day and hadn’t done anything wrong. She said that she needed to take extra shots to get her blood sugar back down. Ryan asked Chelsey how many times she has to check her blood sugar each day and she said that she tests about 6-7 times each day at school alone. She tests before during and after every sporting activity she is involved in. Chelsey’s mother, Cathy expressed the concerns of all parents of diabetic children those of the eventual and devastating complications that come later in life. She said that it is hard for people like Ryan to understand that looking at these children today because they look so healthy. Chelsey asked Ryan to promise to remember her and the others who suffer with type one diabetes. Ryan said that he would remember.

 Congressman Ryan told the children that meeting with their representatives and talking to them about this important issue is the best thing they can do to effect a change in policy and increase the funding to find a cure. He encouraged them to continue to advocate for themselves. He also invited them to visit him when they are in Washington DC. Congressman Ryan did not mention that he had any connection to diabetes.

Congressman Ralph Regula (OH 16)

January 23, 2004

Pictured are: (left to right)

Lindsey, Stephanie, Representative Regula, Annie, Emma 

The group thanked Representative Regula for meeting with them and for his support of NIH through his position on the House Appropriations Committee. They also expressed their concern with the current policy regarding stem cell research and asked him to support all legislation that would expand that field. Representative Regula expressed interested in islet transplantation and the group explained the process to him. He was very interested in both avenues of promising research and said that he would follow the issues very closely. The group left a copy of the Embryonic Stem Cells JDRF Position Paper with him.

Annie thanked Representative Regula for meeting with her when she was in Washington for Children’s Congress last summer. She told him that what she hates the most about diabetes is having to get shots and "pokes". She told him that she has taken over 3240 shots and over 5400 "pokes". She said that one day in school she was taking an important test and she felt droopy and shaky and was low so she had to go to the clinic and have a snack. That really upset her. Annie gave Representative Regula a card that she made for him with a picture of him with her during his visit at the JDRF Walk in Canton this September. Annie asked Representative Regula to promise to remember her when he is making important decisions that will help find a cure for diabetes.

Emma told Representative Regula that the worst thing about having diabetes is having to check her blood sugar at least 7 times a day. She gave him a poster with a newspaper article about her and Lindsey Moneypenny. The article is about how Lindsey is Emma’s babysitter and how they both share the desire to find a cure for juvenile diabetes. Emma asked Representative Regula to promise to remember her when he is making laws that will help find a cure. Representative Regula said he would remember her.

Lindsey told Representative Regula that having diabetes has completely changed her life. She has been hospitalized several times because her blood sugar was too low. She told him about the time that she had a seizure from being so low. Lindsey used to be a baseball player but cannot participate in that activity any longer because of her blood sugar fluctuations. She told Representative Regula that she has had to have a thyrodectomy because of her diabetes. Lindsey just finished getting her drivers license and told Representative Regula that being diabetic caused her to have to wait longer to get it and will require her to get a renewal every 6 months. If her blood glucose is too high or too low she will not be able to drive. She thanked Representative Regula for meeting with her today and asked him to help her find a cure for diabetes.

Stephanie talked to Representative Regula about the day she was diagnosed, how she went directly to the hospital and couldn’t believe that she would have to get shots for the rest of her life. She said that it was the worst day of her life. She gave him a booklet that she developed to hand out at the beginning of the school year explaining to her classmates what diabetes is and how they couldn’t catch it from her. She showed him her insulin pump and told him that she has to wear that to stay alive and told him about having to test her blood sugar by sticking a needle in her finger. She said that although she looks like a normal kid from the outside, she needs a cure soon. Stephanie asked Representative Regula to promise to remember her when he was making legislative decisions regarding funding for a cure for diabetes. Regula said that he remembered meeting with Stephanie on a number of occasions, in 2002 for the last Promise meetings, in Washington for Children’s Congress and then this September at the JDRF Walk in Canton.

Representative Regula thanked the children for coming to talk to him and for the cards and pictures that they made and left for him. He told them that he would remember them.