fabry-support--information-group-fsig-153976

Celebrating 30 Years of Support, Strength & Hope

Fri, 04 Sep 2026 22:06:57 GMT

This year, FSIG proudly celebrates 30 years of supporting individuals and families affected by Fabry disease. What began in 1996 as a small group of families searching for answers has grown into a global community of strength, hope, and advocacy.

Together, we have raised awareness, advanced newborn screening, supported research, educated families and healthcare providers, and created opportunities for connection that make a real difference.

read the press release here

Looking Ahead

The future is bright because of you. Together, we will continue to build a world where every person with Fabry disease is diagnosed early, treated appropriately, and supported through every step of their journey.

JOIN US IN MAKING A DIFFERENCE

September is Newborn Screening Awareness Month

Fri, 04 Sep 2026 13:47:54 GMT

This September marks the 52nd anniversary of newborn screening. Here at the Testing for Tots program, we believe that early detection, diagnosis and intervention can prevent death or disability and enable children to reach their full potential. Rare, and mostly treatable, conditions are screened for within the first 1-2 days after birth. All it takes is a few drops of blood from a heel stick that is then reviewed in the associated laboratory for serious conditions. (The comprehensive newborn screening panel consists of 3 parts – blood test, hearing and pulse oximetry screens). Although these conditions are rare, about 5,000 babies are diagnosed each year with a rare condition.

Why Newborn Screening Matters

Newborn screening is a critical tool in the belt of the rare disease community. The number of conditions screened vary from state to state. Our team has been working on adding Fabry Disease in multiple states across the nation (Colorado, Georgia, Massachusetts, Pennsylvania and Wisconsin). If you are interested in supporting our initiatives or partnering with us for your home state, email us at testingfortots@fabry.org .

FSIG's Commitment

Through our Testing for Tots program, FSIG advocates for expanded newborn screening and works to ensure families and healthcare providers understand the importance of early detection. Together, we can help every baby get the best possible start in life.

FSIG Earns Candid Platinum Seal

duda@neonone.com — Thu, 20 Nov 2025 22:40:43 GMT

FSIG Achieves Candid’s Platinum Seal of Transparency

We’re excited to share a major milestone for FSIG: we’ve officially been awarded the Platinum Seal of Transparency from Candid , the highest level of recognition offered by the leading nonprofit information resource.

This achievement reflects our ongoing commitment to openness, accountability, and responsible stewardship of the resources entrusted to us. The Platinum Seal is only awarded to organizations that go above and beyond in sharing detailed information about their goals, strategies, impact, and financials—ensuring donors and partners can engage with full confidence.

At FSIG, transparency isn’t just a requirement; it’s a core value. By publicly sharing our metrics, progress, and long-term vision, we aim to build trust and demonstrate the tangible outcomes of our work. Receiving Candid’s Platinum Seal reaffirms that dedication and inspires us to continue raising the bar.

Thank you to our supporters, partners, and community members who help make this work possible. Together, we will keep driving impact—and doing it with clarity and integrity.

Onward and upward!

LSD Coalition Created and Brian Jones is Treasurer

Thu, 26 Sep 2024 16:37:09 GMT

New Lysosomal Storage Disease Advocacy Coalition Formed to Advance Patient Advocacy

Testing for Tots founders Dr. Brian Jones and Mrs. Tia Jones are delighted to announce the formation of the Lysosomal Storage Disease Advocacy Coalition (LSDAC).

The Lysosomal Storage Disease Advocacy Coalition is a nonprofit coalition of patient advocacy organizations dedicated to advancing public policy priorities that benefit individuals and families living with lysosomal storage disorders (LSDs).

Bringing Patient Advocacy Organizations Together

With Dr. Brian Jones serving as Treasurer, the following organizations are founding partners of the coalition:

Fabry Support and Information Group (FSIG)
National Fabry Disease Foundation
Gaucher Community Alliance
The MPS Society
National Niemann-Pick Foundation
Testing for Tots

Together, these organizations represent communities affected by a range of lysosomal storage disorders and share a commitment to improving outcomes for patients and families.

Leadership of the Coalition

Aviva Rosenberg, Co-President of the Gaucher Community Alliance, will serve as the coalition's inaugural President.

Justin Hopkin of the National Niemann-Pick Foundation will serve as Vice President, with Dr. Brian Jones serving as Treasurer.

Advancing Key Policy Priorities

The coalition will focus on several key priorities that have the potential to improve access, treatment, research, and support for individuals living with LSDs:

Expanding newborn screening for lysosomal storage disorders to all 50 states.
Introducing and passing Medicare home infusion for patients with LSDs.
Advocating for increased funding for research into lysosomal storage disorders.
Raising awareness of LSDs among members of Congress and other key stakeholders.

Working Together for the LSD Community

The goal of the Lysosomal Storage Disease Advocacy Coalition is to work alongside policymakers, pharmaceutical companies, national medical societies, and other stakeholders to advance policies that benefit patients and improve the quality of life for current and future generations living with lysosomal storage disorders.

By bringing patient advocacy organizations together, LSDAC hopes to create a stronger, unified voice for the LSD community.

Interested in Joining the Coalition?

Organizations interested in joining the Lysosomal Storage Disease Advocacy Coalition can contact:

Aviva Rosenberg
Aviva@gauchercommunity.org

Big Thank You

Thu, 26 Sep 2024 16:31:29 GMT

A Big Thank You

A BIG thanks to the Genetic Disease Foundation for the generous grant for our newborn screening initiative. It is donors like you that help our communities most vulnerable, newborns, be screened for the rare genetic disorder Fabry Disease. This donation will help move our mission forward significantly. We aim to have newborn screening panels also include Fabry Disease in several states (Massachussettes, South Carolina, Georgia, Utah, Colorado, Nebraska, Wisconsin, Wyoming and Minnesota) in the next year and this money will help us get even closer to that goal!

Check out our website ( https://fabry.org/testing-for-tots/ ) and contact us by email ( testingfortots@gmail.com ) if you would like to learn how to be a sponsor!

#newbornscreening #fabrydisease