Fallon was born on October 10, 2013, at 4:44 a.m. Minutes later, she was whisked away from her parents and the decision was made to send her to another hospital with an experienced NICU. In less than 24 hours, she was moved to a third hospital, Morgan Stanley Children’s Hospital in New York City, which had a yet potentially life-saving heart and lung bypass machine called an ECMO machine. Fallon arrived with minutes to live.
Fallon passed away a few days later, on October 21. “We held her while she took her final breath; a moment we will never, ever forget,” said Kristen.
It was not until two months later with Fallon’s final autopsy results that a lung biopsy revealed Fallon had died from a rare disease called Alveolar Capillary Dysplasia with Misalignment of Pulmonary Veins.
ACD/MPV is a rare, incurable lung disease that is apparent at birth. It affects the development of the lungs and their blood vessels. Without a lung transplant, ACD/MPV is fatal. Babies are not likely to survive long enough waiting for a donor (another infant), and even less likely to survive the transplant.
The cause is not known. Only 400 known cases have been identified worldwide since ACD was discovered in 1947.
Since Fallon’s death, Kristen has set out to raise money for ACD research.
“If even one baby can be saved based on that research – we would be so happy,” said Kristen.
To make this happen, Kristen and her family teamed up with the ACD Association, a group of parents around the world who have lost a child to ACD. read more >
The following statement was issued today by Peter L. Saltonstall, President and CEO of NORD, following the release of the second discussion draft by the House Energy and Commerce Committee for its 21st Century Cures initiative:
The second discussion draft of the 21st Century Cures initiative released today includes a number of encouraging ideas on how to advance the development of new medical therapies. The Committee and its staff deserve praise for efforts to bring these ideas together and for their months of work to make this a collaborative and transparent process.
We are encouraged by many of the ideas included in the second discussion draft. Since the initiative was launched one year ago, NORD has advocated for several provisions included therein, including incorporating the patient perspective through the patient-focused drug development initiative, developing registries of natural history data of rare disease patients, increasing transparency in the expanded access process, and increased funding for NIH, among others.
Nothing is more important to the rare disease community than providing an environment conducive to the development of new therapies and access to them. We will conduct a thorough evaluation and will continue to work closely with the Committee and members of the House and Senate as legislation moves forward.
Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)
On Wednesday, April 29, a hearing will be held in the House of Representatives to consider funding for the Departments of Labor, Health and Human Services, and Education. This is an opportunity to weigh in on the importance of federal funding for medical research and public health preparedness.
At NORD, our goal is to help develop safe, innovative treatment options to fight rare diseases. We need Congress to provide adequate funding to support medical research that can lead to lifesaving cures.
Join Research America in a day-long social media campaign letting Congress know that Americans care about medical progress and want a stronger public health system.
Related news: Read NORD’s Assistant Director of Public Policy Paul Melmeyer’s blog post, “Medical Research Should Be Everyone’s Priority“
To Support Research and Gain a Better Understanding of VHL and other Forms of Cancer, Patients and Medical Experts Around the World will Share Critical Information in Search of a Cure! read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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