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

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!

Nebraska Newborn Screening

duda@neonone.com — Thu, 26 Sep 2024 16:37:41 GMT

LSD Coalition Created and Brian Jones is Treasurer

Our Newborn Screening Coordinator, Rachelen Varghese, presented to the Newborn Screening and Genetics committee in Nebraska on July 25th, 2023. The presentation covered in-depth facts about Fabry Disease, positive consequences of receiving timely therapy and the negative impact of delayed screening. The committee was very gracious in receiving the information and posed several introspective questions at the end. Our need is to find a physician, local to Nebraska, who is a voting member of the committee and can nominate the condition for consideration for inclusion in the state’s newborn screening panel. In the meantime, Rachelen will be reviewing economist papers to address concerns about cost versus insurance coverage of treatment in the state of Nebraska. Additional research will hopefully cover studies of patients from the time of ERT (Enzyme Replacement Therapy) initiation to end of life and ethics about family testing. We would be grateful to connect with local patients to understand the cost of Galafold vs ERT treatment and necessary support from facilities and healthcare providers. If you are a Nebraska resident and affected by Fabry Disease, please reach out to us via testingfortots@gmail.com.

LSD Coalition Created and Brian Jones is Treasurer

duda@neonone.com — Thu, 26 Sep 2024 16:37:09 GMT

LSD Coalition Created and Brian Jones is Treasurer

Testing for Tots founders, Dr Brian and Mrs Tia Jones, are delighted to announce the formation of The Lysosomal Storage Disease Advocacy Coalition (LSDAC). This non-profit coalition of multiple patient advocacy organizations is dedicated to advancing public policy priorities to benefit several communities living with lysosomal storage disorders (LSDs). With Dr Brian Jones serving as treasurer, these are the following organizations who are founding partners:

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

Aviva Rosenberg, Co-President of the Gaucher Community Alliance will serve as inaugural President and Justin Hopkin of the National Neimann-Pick Foundation will be Vice President. The coalition will focus on:

Extending Newborn Screening for Lysosomal Storage Disorders to all 50 States.
Introduce and Pass Medicare Home Infusion for LSD Patients.
Advocating for increased funding for research into LSDs.
Raising awareness of LSDs to Congress and other Stakeholders.

Our goal is to work alongside policymakers, pharmaceutical companies, national medical societies, and other stakeholders to advance policies that benefit and improve the quality of life for current and future patients with LSDs. To join the Lysosomal Storage Disease Advocacy Coalition, please contact Aviva Rosenberg at Aviva@gauchercommunity.org or James Romano at jromano@careandcurepartners.com .

September is NBS Awareness Month

duda@neonone.com — Thu, 26 Sep 2024 16:33:38 GMT

This September marks the 50th 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.

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 (Georgia, Massachusetts, South Carolina, Utah, Colorado, Nebraska, and Wisconsin). If you are interested in supporting our initiatives or partnering with us for your home state, email us at testingfortots@gmail.com .

Big Thank You

duda@neonone.com — Thu, 26 Sep 2024 16:31:29 GMT

Newborn Screening

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

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duda@neonone.com — Mon, 15 Apr 2019 12:40:28 GMT

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

FSIG Earns Candid Platinum Seal

FSIG Achieves Candid’s Platinum Seal of Transparency

Nebraska Newborn Screening

LSD Coalition Created and Brian Jones is Treasurer ﻿

LSD Coalition Created and Brian Jones is Treasurer

LSD Coalition Created and Brian Jones is Treasurer ﻿

September is NBS Awareness Month

Big Thank You

Newborn Screening ﻿

Add a blog post title

This is a subtitle for your new post

Add a blog post title

This is a subtitle for your new post

Add a blog post title

Add a blog and update it regularly. It's a great way to stay in touch with site visitors.

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LSD Coalition Created and Brian Jones is Treasurer

LSD Coalition Created and Brian Jones is Treasurer

Newborn Screening