Kean, Gottheimer Introduce Resolution Raising Awareness for Rare Genetic Disorder, Shwachman-Diamond Syndrome

(March 20, 2026) WASHINGTON, D.C. - Today, Congressman Tom Kean, Jr. (NJ-07) and Congressman Josh Gottheimer (NJ-05) introduced a bipartisan resolution designating November 7 of each year as National Shwachman Diamond Syndrome Awareness Day. Shwachman-Diamond syndrome (SDS) is a rare genetic condition affecting an estimated 2,000 Americans that impairs the body's bone marrow, pancreas, and skeleton, and can lead to an increased risk of blood disorders including acute myeloid leukemia.

"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."

"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.

Background:

Shwachman-Diamond syndrome (SDS) affects an estimated 2,000 Americans, occurring in approximately 1 in 80,000 newborns. Because the signs and symptoms of SDS can vary widely between patients, the condition is frequently under diagnosed and requires a combination of clinical evaluation, blood tests, and genetic testing. While treatments exist to manage symptoms and treat complications, there is currently no cure and SDS can shorten life expectancy.

The push for a national awareness day was driven by Joyce Fitz, a 17-year-old advocate from Linden, New Jersey and current senior at the Union County Academy of Allied Health and Sciences. Joyce was diagnosed with SDS after 19 months of seeking answers. For years, she has navigated bone marrow biopsies, specialist appointments, and the daily realities of living with a complex, immunocompromised condition.

Joyce chose November 7 as the awareness date to celebrate the month the disease was first identified in 1964 and the most common gene mutation (7q11) associated with SDS. A similar resolution was also introduced in the New Jersey State Assembly earlier this year.

Congressman Kean is a member of the Congressional Rare Disease Caucus and serves on the Health Subcommittee of the House Energy & Commerce Committee.

The full text of the resolution can be viewed HERE.

Congressman Tom Kean, Jr. (NJ-07) meets with Joyce Fitz, 17-year-old patient advocate from Linden, New Jersey.

###