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Shwachman-Diamond Syndrome Alliance

Dear <<First Name>>,

What a year it has been! We have been busy with so many research tool and infrastructure projects and are excited to share some more updates with you as the year is coming to a close.

Please help up start the new year with confidence by contributing to our year-end Holiday Heroes fundraising campaign, now.

Happy Holidays and a Healthy New Year!!!

SDS Alliance Meets with the FDA

The SDS Alliance focuses on making therapies and cures a reality for SDS patients worldwide. A major stakeholder in this journey is the FDA (the US Food and Drug Administration). Engaging with the FDA early and meaningfully is a high priority on our roadmap.

On November 15th, Dr. Eszter Hars (SDS Alliance president and CEO) joined the FDA CBER OTAT Patient-Focused Drug Development Listening Meeting — Patient Perspectives on Gene Therapy Products meeting. We took the opportunity to highlight our community’s needs and perspectives, as several gene therapy projects are advancing - slowly but surely - towards the clinic.

This meeting was our first step in working with the FDA to facilitate the evaluation of SDS therapies in the future.

Read more here

SDS Cell Biobank Pilot Project a success!

After the successful launch of the mouse model project last year and advancing it to phase two this year, we have expanded our efforts to develop additional critical research tools to enable the development of therapies and cures for SDS. These projects are part of our focus to develop research tools and infrastructure as outlined in our roadmap.

One such effort is the SDS Cell Biobank, designed to enable researchers fast, easy, and affordable access to SDS patient-derived cells and cell lines – no matter where the researchers or patients are in the world. A biobank is a collection of biological samples (such as blood or cell lines derived from blood cells) and health information for research purposes. Up until now, there was no public biobank for SDS patient samples, and access to such samples was difficult and slow for researchers who are not affiliated with research institutions that see SDS patients regularly.

To address this critical need, we partnered with the Coriell Institute and launched a pilot program to bank and distribute Shwachman-Diamond Syndrome (SDS) patient-derived cell lines, globally.

Read more here

Holiday Heroes - Your Opportunity to Make a Difference this Holiday Season

Charitable Giving Season officially started Giving Tuesday on November 29th and ends at the end of the year, giving donors the benefit of tax deduction for 2022. As a patient-driven nonprofit, we need your support. We are dedicating 100% of public donations to research, research tools, and infrastructure, and are working diligently to leverage every donation to the fullest to ensure that your donation has the maximum impact on therapies and cures for your loved one.

This year, we developed a tool kit (personalized social media graphics, text templates, etc.) to help our community raise funds successfully. Please reach out at community@SDSAlliance.org or on Facebook if you would like to participate!

To donate or to set up your own fundraising page, visit https://www.sdsalliance.org/campaign

Donate here

In Loving Memory

While we always try to celebrate any victories in our quest for therapies and cures for SDS, the harsh reality of today is that SDS is still life-threatening and is claiming the lives of loved ones in our community. Every single person lost is one too many, and we won't stop fighting for therapies and cures until a bright future is available to all people affected by SDS.

To acknowledge our losses and hold space for the families, we created a page in memory of our loved ones. https://www.sdsalliance.org/in-loving-memory

Please reach out to us on Facebook or at connect@SDSAlliance.org if you would like to create a post about your loved one. We are here to support you.

In Loving Memory

If you are new to the community or missed what we are all about:

Research Strategy and Roadmap

Have you ever wondered how the mouse model fits into the SDS therapy & cure development roadmap? Here is a little graphic to put the mouse model project into context. For an overview of our research strategy and details about our roadmap to SDS therapies and cures, please visit our website at https://www.sdsalliance.org/strategy-roadmap

Read about the launch of the mouse project with The Jackson Laboratory, here.

Quick video about our mission and vision

Turn Hope into Action - How We Will Find a Cure for SDS