TI Tween to Lobby Congress

TI Tween to Lobby Congress

By Betsy Judge

Samantha Singh is taking her fight against Type 1 Diabetes (T1D) to the nation’s capital. The 10- year-old Treasure Island resident, active with the Juvenile Diabetes Research Foundation (JDRF), was selected from 1,500 candidates with T1D to visit Washington D.C. July 24 – 26 and lobby members of Congress about the vital need for T1D research.

In addition to the application, she had to create a video and build a scrapbook that tells her story. Her mom Joyce Singh says her work as an ambassador for JDRF where she speaks about T1D to companies like Raymond James and Data Tech and actively sup- ports area fundraisers also contributed to her selection.

This page from Samantha Singh’s scrapbook tells her legislators and others that she was 4 years old when doctors discovered her blood sugar was 750 and diagnosed her with Type 1 Diabetes (T1D). Normal range is between 80 and 120. Sam writes, “This was a scary time. We knew nothing about T1D but we did know we would not let it win!” They have been fighting ever since.

“You’re very lucky to get picked,” Samantha (Sam) says taking her mission very seriously. “It’s a once-in-a-lifetime opportunity, so I have to make the most of it this year.”

As a participant in the JDRF 2017 Children’s Congress, Sam has prepared letters to Senators Bill Nelson and Marco Rubio along with Congressman Charlie Crist introducing herself and requesting meetings while she is there.

The entire delegation of 150 participants (ages 4 – 17) will attend a Congressional hearing July 25; eight participants will be selected to speak there. They will also go through what Sam calls Capitol Hill blitz training, “So we can go over our talking points.” Then on July 26 they meet with their respective legislators.

There are callouses on each of Sam’s fingers from the pricks to measure her blood sugar about eight timesina24hourperiod–day and night. Shehasan electrode for a CGM (Continuous Glucose Monitor) under the skin of her stomach that constantly moni- tors the glucose levels in her tissue fluid. It is connected to a transmitter that sends the information via wifi to an ap on Sam’s phone which syncs to her mother’s phone with a CGM ap. Then there is the pump in her arm that administers the insulin she needs.

This JDRF sneaker is used for the annual One Walk fundraiser in April. Samantha and Joyce Singh hope local businesses will display them to promote Sam’s trip to Washington DC for the Children’s Congress and create awareness about T1D.

The aspiring athlete and author talks about things a 10-year old should not have to think about, like the prospects for encapsulated beta cell replacement therapies being explored by JDRF. “They grow the beta cells in a lab and then put them in a plastic coating about the size of a credit card under your skin where your pancreas should be. Because it is coated in plastic, the immune system can’t attack it like it does your pancreas. It has to be replaced every two years, but it does everything–it senses the changes in blood sugar levels and releas- es insulin whenever it’s needed.”

It is future funding for research projects like this that has Sam and her mom worried. “I’m going to talk about how important it is to continue funding research,” says Sam. “If it gets cut that could set us back years.”

Of particular concern is the Special Diabetes Program (SDP), which was enacted by Congress in 1997 and has to be renewed every two years. “We get $150 million for research ever year and it expires in September, so that’s why we’re going in July,” adds Joyce. “It’s our big push to make sure that we secure that $150 million again.” They are also asking for a three-year renewal period.

“The other big thing in DC is insurance because now the insurance companies are not allowing kids to choose the types of equipment they use,” says Sam. “All the equipment, the strips, the meters, the pump, the insulin is so expensive, a lot of people around the world can’t afford it and they die … so we’re trying to get the cost of that down.”

On the last page of Sam’s scrapbook she notes the pot at the end of her rainbow is a cure for T1D.

Sam laments the lack of understanding about T1D and the confusion people have with it and Type 2 Diabetes. “They don’t understand how deadly it is. They think, ‘Oh she just ate too much sugar; she just needs to go exercise; what does she need our money for.”

To support Sam’s efforts, Treasure Island Mayor Bob Minning issued a proclamation in late June, and the Treasure Island Madeira Beach Chamber is working with area businesses to create awareness and track her progress with JDRF sneakers in their windows.

Joyce looks at her CGM ap. “Sam, your dropping, we need to order some cheese sticks or something.” And so it goes.

View Sam’s scrapbook at here. For more information about T1D go to www.jdrf.org.