The Ryan Family Meets with Congressman Burgess
On September 18th, 2001, a year before running for congress, Michael Burgess, who at the time was a physician, delivered a beautiful healthy baby girl, Jenna, into the loving arms of Dee and Kevin Ryan. Kevin Ryan was an active duty Air Force officer in the Office of Special Investigations. He was deployed to fight in Iraq and received a Bronze Star for his heroism in battle. Now that Kevin is home, he and his family have a much more harrowing fight to face; their daughter’s battle against the degenerative kidney disease Nephrotic Syndrome.
At the age of six, Jenna entered the hospital to battle her acute kidney failure. Unfortunately, Jenna suffered painful complications which included developing pneumonia, hypertension and episodes of tachycardia. Her parents were left to watch helplessly as their daughter bravely endured the assault that was taking place internally. Now, Dee and Kevin have joined The NephCure Foundation’s advocacy initiative. They are taking a stand and speaking out about their daughter’s condition and the extreme need for research and treatment options regarding Nephrotic Syndrome.
On January 31st, Dee, Kevin and the Washington Representative for The NephCure Foundation, Dale Dirks, met with the now congressman who delivered Jenna into the world, Michael Burgess, 26th district of Texas. At this meeting they discussed the harsh reality of families affected by this disease and the need for increased funding and research sponsored by the government into Nephrotic Syndrome. In addition to relieving the suffering of patients and families, a cure would ultimately reduce the federal government’s spending on kidney dialysis. Also highlighted at the meeting were The NephCure Foundation’s tireless efforts to convince Congress to:
-
Support significant funding increases for
the National Institutes of Health (NIH) and
National Institute of Diabetes and Digestive
and Kidney Diseases in the Fiscal Year 2009
Labor, Health and Human Services, Education,
and Related Agencies Appropriations bill.
Recent years of near level funding for the
NIH have created a situation that has impeded
current research and made stimulating new
research initiatives on FSGS difficult.
- Support
funding for the first-ever national database/registry
for glomuerlar diseases.
- Encourage the Office
of Rare Disease to support FSGS research initiatives,
particularly the establishment of a FSGS/NS Clinical
Research Network.
- Contact the National Center for Minority Health and Health Disparities and urge them to support FSGS/NS research initiatives due to the fact that FSGS/NS disproportionately affects minority populations.
As the brave Ryan family continues to battle NS at home and abroad we hope that congress will join their fight and help The NephCure Foundation discover a cause and cure for the disease.
"When constituents of mine came to me not long ago to talk about their daughter's struggle with Nephrotic Syndrome, I knew this was a worthy cause that deserves nationwide awareness and support. As a doctor, medicine has always been a top priority of mine, and now, as a Congressman, I am eager to continue my efforts at the national level by working with advocacy groups like NephCure.”
If you are inspired by the Ryan’s story and would like to learn more about how you can help, please contact Miriam Long at (610) 540 0186 ext. 10 or email mlong@nephcure.org.