Source: The Global Genes Project
By Heather Long
During the week of April 9, 2013 Representative John Carter (TX-31) is planning to re-introduce my son’s bill – The CAL Undiagnosed Diseases Research & Collaboration Network Act.
Prior to the re-introduction, other House of Representatives members are being sought to sign on as original co-sponsors. The more Representatives that sign on as original co-sponsors, the better. Please contact your Representative in Congress and tell them that you want them to be an original co-sponsor to Cal’s Bill and urge them to contact Representative John Carter’s office.
If you don’t know who your U.S. Representative is, go to http://www.house.gov/ and typing your zip code in the box at the top right hand corner labeled “FIND YOUR REPRESENTATIVE.”
One of Heather Long’s three children (Cal) passed away in 2006 at five years old to an undiagnosed disease. Heather was told that her son’s death was likely caused by a very rare metabolic disease, and she has since focused her energies on being an advocate for patients suffering from undiagnosed and rare diseases.
In 2008, Heather co-founded a nonprofit organization, U.R. Our Hope., that assists individuals and families who are on the journey of finding a diagnosis or are navigating through the health care system after a rare diagnosis. In 2011, Heather co-authored H.R. 2671- The CAL Undiagnosed Diseases Research and Collaboration Network Act, which was proposed in the 112th Congress and is scheduled to be re-introduced during the current 113th session. And recently, Heather proudly joined the Global Genes Advocacy Leadership Group.