How a Young SDS Advocate Got November 7 Recognized as SDS Awareness Day in New Jersey

7 hours ago

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On August 6, 2026, Gov. Mikie Sherrill signed Assembly Joint Resolution 119, recognizing November 7 as Shwachman-Diamond Syndrome Awareness Day in New Jersey. The resolution passed the Assembly 77 to 0 and the Senate 40 to 0.

Behind this milestone achievement is Joyce, a young advocate with SDS who started speaking up and sharing her SDS story when she was just 13. She brought this idea to her assemblywoman while she was still a teenager, and then saw it through every step.

Today she is taking a gap semester, interning in Washington, DC, and starting at NYU in the spring to study public policy.

Eszter Hars, PhD, SDS Alliance CEO, sat down with Joyce on October 30, 2026, to ask how she did it, why it matters, and what she would tell other families. Here is what we learned.

Watch the full conversation

Interview with Joyce about her efforts in getting SDS Awareness Day recognized in New Jersey, and her WHY. About 30 minutes. Recorded October 30, 2026.

Why she made it happen

Joyce had watched friends in other rare disease communities work to get awareness days for their conditions. She saw a way to do the same for SDS.

That's, like, 100 new lawmakers who have never heard of the condition, who are now aware that the condition is a real thing and that real people are impacted by it.

SDS affects an estimated 2,000 to 3,000 people in the US, and many doctors have never heard of it. Joyce's goal was simple: let people know the condition exists.

We can't get treatment or research or funds if nobody knows that the condition exists.

Why November 7

Joyce researched the history of SDS and found that the condition was first described in November 1964 in a publication by Boston Childrens' Hospital doctors Dr. Shwachman and Dr. Diamond, so she chose November. For the day, she picked the 7th, because the SBDS gene (the gene responsible for most SDS cases) is on Chromosome 7, section11 (also known as 7q11). She flipped that into 11/7 or November 7th.

I wanted everyone to be able to celebrate their condition even if they weren't genetically diagnosed.

That is why the date works for the whole SDS community, whatever their gene or diagnosis.

The timeline for the NJ recognition of SDS Awareness Day to be established

June 2025: Joyce met with Assemblywoman Linda Carter and shared the idea. The assemblywoman liked it and suggested waiting for the next legislative session to begin.
January 2026: The resolution was introduced as AJR 119, with bipartisan support.
May 12: Assembly committee hearing.
May 18: The Assembly passed it, 77 to 0.
June 11: Senate committee hearing.
June 30: The Senate passed it, 40 to 0.
August 6: Gov. Mikie Sherrill signed it.

The resolution asks the governor to issue a proclamation each year recognizing November 7 as Shwachman-Diamond Syndrome Awareness Day.

How she did it, step by step

Joyce is the first to say that none of this was complicated, just slow. We still give her tremendous credit. A field trip to the State House in her AP Government class in high school showed her how a bill is introduced and sparked the idea. Here is her process:

Start with your local representative. Joyce shared the idea with Assemblywoman Carter. They wrote the language together, so that every fact was correct.
Introduce the resolution, then campaign for it. She called every office in the State House and asked them to cosponsor.
Get leadership on board. Senate President Nick Scutari and Speaker Craig Coughlin cosponsored it. Joyce explains that leaders decide what gets scheduled, so their support helped move the resolution through hearings and votes.
Share your story at the hearings. She wrote a speech and testified at both committee hearings, and she was at the State House for the votes.
Repeat in the second chamber, then the governor.
Be patient. She waited from June to January so that the resolution could be introduced at the start of a session, with enough time to pass both chambers.

Rules and calendars differ from state to state. If you want to try this where you live, start with a conversation with your state representative.

Her advice to other young people

Joyce started advocating at 13 and was scared at first.

I have mentored advocates as young as 6 years old, and it doesn't matter what age you are, you can get out there. You could share your story. You could contact your representative. After you do it once or even twice, … you realize how friendly these people are, how they really truly want to listen to their community.

What she is pursuing next

After the New Jersey resolution, Joyce shared the language with her US representative, and a federal resolution, H.Res.1133, was introduced in the House on March 24, 2026, with Reps. Tom Kean Jr. and Josh Gottheimer as sponsors. At Camp Sunshine, 46 community members signed a letter supporting it. As of November 7, 2026, it is awaiting committee review.

Because a new Congress starts in January 2027, the resolution may need to be reintroduced in the next session. Joyce plans to keep going. US families who would like to help can ask their representative to cosponsor H.Res.1133. You will find a short message you can adapt in our Action Week checklist, and the full text of the resolution is on congress.gov.

Joyce's advocacy for the federal resolution is her own initiative. SDS Alliance is proud to share her story and to celebrate the New Jersey recognition.

More about Joyce

Joyce also loves horseback riding, singing, and musical theater, and she performs in New York. She wrote and recorded a song about her SDS experience, titled "Don't Surrender to Fear", as part of the 2026 Rare Artist program from Rare Advocates. More about the song here.

She is now working with a producer on a collection of new songs about the rare disease journey, with a full album planned for late 2027.

Thank you

Thank you, Joyce, for showing what one person with a good idea can do. Thank you to Assemblywoman Linda Carter, Senate President Nick Scutari, Speaker Craig Coughlin, and Gov. Mikie Sherrill for making November 7 official in New Jersey.

Share your story, too

Joyce's advice applies to all of us: your story matters, and you can share it at any age. There are many ways and opportunities to share your story and make an impact toward more research and clinical trials by 2030, so that SDS patients and families can have more birthdays to celebrate.

You can share your story on our blog, on your own social media channels, in your personal network, school, or work. We are here to help with resources and guidance. If you would like to stay more private, consider contributing to our Essential Guide, and find your chapter in our story tool. Pseudonyms are welcome.