Three Generations of Advocacy: Meet the Shaheens, Children’s Congress Chair Family

By Talley Henning Brown

Elle Shaheen has leadership in her blood. She is the granddaughter of U.S. Senator Jeanne Shaheen of New Hampshire—the first woman in American history to be elected both governor and U.S. senator, and current Co-Chair of the Senate Diabetes Caucus—and the daughter of Stefany Shaheen, former White House intern, Harvard alumna, and 2007 International Academy of Achievement Delegate. Elle follows in some pretty big footsteps, and carries an additional challenge—type 1 diabetes. Diagnosed at the age of eight, Elle, now 11, balances continual diabetes management with school, advocacy work, and a very busy singing, dancing, and acting hobby—the very definition of grace under pressure.

It was Elle’s diagnosis of type 1 diabetes the week of Thanksgiving, 2007, that got Stefany and Elle Shaheen deeply involved in JDRF. The Shaheens were traveling when Stefany spotted the first symptoms in Elle, her oldest daughter. Familiar with type 1 diabetes because her brother-in-law has the disease, Stefany observed sudden weight loss, excessive thirst, and unexplained moodiness in her usually cheerful, vivacious daughter. The pediatrician they rushed to assured them it was probably just a virus, but thanks to her mother’s insistence, a urine test was performed, and Elle’s diagnosis was confirmed—her blood sugar was so high that had she not been diagnosed, a single glass of orange juice could have put her into a diabetic coma. As all families dealing with type 1 diabetes know, that holiday ordeal was only the beginning, and the following Thanksgiving, in fact, the Shaheens were faced with an unfortunate case of déjà vu: Elle was rushed to the hospital following a seizure. Upon waking at the hospital, nine-year-old Elle, a consummate actor, singer, and dancer since the age of three, said she wanted to perform that night. “I am ready. The show must go on!” she insisted. And perform she did.

Elle’s determination is not uncommon among children with type 1 diabetes, and her family presents a unified front, taking a head-on approach to dealing with the disease. “We try to provide a forum in our home and in public where we’re very candid and direct about what it means to have type 1 diabetes,” says Ms. Shaheen, who, with her husband Craig Welch, is raising four children—Elle, 11, Annah, 10, Caraline, 7, and William, 5. “We answer questions honestly all the time, instead of just telling people that everything’s fine when it’s not.” And Ms. Shaheen is teaching her daughter to preempt awkward situations with new people by simply “putting it out there” from the beginning.

The family’s advocacy efforts—with JDRF and otherwise—are part of that equation. “Having grown up in a family of advocates, I know that working to make your voice heard is one of the most gratifying experiences a person can have,” Ms. Shaheen says, “and raising your voice collectively, as part of a group with a shared goal, is even more powerful.” Ms. Shaheen and Mr. Welch, who celebrated their 13th wedding anniversary on the opening day of Children’s Congress, June 20, were both centrally involved in Senator Shaheen’s first campaign for New Hampshire governor in 1996—Governor Shaheen served three contiguous terms. Mr. Welch served as a policy advisor on Y2K in Governor Shaheen’s administration and later chaired the Land and Community Heritage Investment Program created during her tenure. He is currently Vice President for Housing at the New Hampshire Community Loan Fund, which provides financing and other housing support for people with low-to-moderate incomes.

Elle and her mother have been very deeply involved in advocating in favor of stem cell research, even campaigning with actor Michael J. Fox, and Elle was present with President Barack Obama when he signed the 2009 executive order reversing the Bush-era policy that severely limited the promising research.

Elle also helped further medical research by participating in a clinical study for a possible new drug therapy, something that she and her mother strongly encourage others who are able to do. “Being in a clinical study brings it home in a way that just reading about research can’t do. It makes you realize, we really can be part of the process of finding a cure.” With JDRF, the family have participated in the Northern New England Chapter Spring Gala for several years; Elle was a Children’s Congress delegate in 2009; and Ms. Shaheen is currently serving on the Government Relations Committee.

Ms.Shaheen was invited to chair the 2011 Children’s Congress by Cynthia Ford, the 2009 Children’s Congress Chair and a member of the JDRF Board of Directors, and Larry Soler, former Chief Operating Officer at JDRF. As Chair, Ms. Shaheen was involved in selecting the delegates and communicating with delegates and their families about how to prepare for the event—guiding them through scheduling meetings with their Congressional representatives and creating the type 1 diabetes scrap books they would show at those meetings. She helped set the three-day itinerary of events and was also actively engaged in inviting some of this year’s dignitaries, including Supreme Court Associate Justice Sonia Sotomayor (see “Sonia Sotomayor Convenes the Children’s Congress Town Hall”). Then on June 20, she launched the event with opening remarks, joined by Elle, and presented a commemorative coin featuring the Capitol building to each delegate.

One of the largest advocacy events to descend on the country’s capital, Children’s Congress is always a massive undertaking. “I hope that everyone—the delegates, their families, and Members of Congress—come away from this event with a renewed sense of energy and momentum and focus,” she says. “But it is also crucial to remember that there is more work to do, that we need to build on this momentum, and that we can’t do that without everyone actively engaged in the effort. I believe it’s possible, if we work together collectively…that one day, before Elle goes to college, she’ll have an artificial pancreas, and before she has a child, there will be a cure.”