WASHINGTON, D.C. — U.S. Reps. Tom Kean Jr. and Josh Gottheimer have introduced a bipartisan resolution to designate Nov. 7 as National Shwachman-Diamond Syndrome Awareness Day, aiming to bring attention to a rare genetic disorder affecting about 2,000 Americans.
Shwachman-Diamond syndrome, or SDS, impacts the body’s bone marrow, pancreas and skeleton and can increase the risk of serious blood disorders, including leukemia. The condition is often underdiagnosed due to varying symptoms and currently has no cure.
“For those living with incredibly rare conditions like SDS, shining a spotlight is the first step toward promoting research and advancing treatment,” said Congressman Tom Kean, Jr. “Joyce Fitz, a Linden resident, has dedicated herself to fighting for recognition for her community, and when she came to my office with this idea, it was clear we needed to spread awareness on the national level. Every individual living with SDS deserves to have their daily fight recognized, and I am proud to lead this bipartisan effort to make that a reality.”
“Families facing rare diseases like Shwachman-Diamond Syndrome don’t have time to wait — and neither can we. We must boost funding for research and strengthen and expand clinical trials,” said Congressman Josh Gottheimer. “I am proud to fight for this bipartisan and commonsense legislation. Families can’t wait. We have a responsibility to push forward until we deliver real hope — and ultimately, a cure.”
The effort was driven in part by Joyce Fitz, a 17-year-old advocate from Linden who was diagnosed with SDS after more than a year of searching for answers. Fitz, a senior at the Union County Academy of Allied Health and Sciences, has worked to raise awareness of the condition and its challenges.
“As a young advocate living with Shwachman Diamond Syndrome I know what it means to face a rare disease with no cure and limited treatment options,” said Joyce Fitz. “Patients and families tackle the daily burdens of complex medical care and uncertainty living with a condition most medical professionals have never even heard of.
“It means the world to me that when I spoke up for my SDS community, Congressman Tom Kean, Jr. truly listened and chose to stand by me on this journey towards bringing national recognition to this disease. Establishing a National Shwachman Diamond Syndrome Awareness Day is the first step to ensure my community is seen, while bringing us one step closer to the research, treatments, and ultimately a cure that patients are waiting for,” Joyce added.
