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Updated: November 20, 2025

Scroll to the bottom of this page to donate by Zelle, PayPal Giving, check, or credit card.

Our charity is finding pockets of research all over the globe that may lead to a permanent treatment for SMA-PME. We have streamlined this research. We now have a path forward we hope will permanently treat as many children as possible in clinical trials.

SMA-PME Research is the name of a 501(c)(3) public charity. This charity accepts donations to help fund work to assist all children affected by SMA-PME. We are bringing the research from the lab to the child.

Your gift will support ongoing medical research–and clinical trials–leading to development of an effective treatment to counter the ASAH1 mutations which cause SMA-PME and Farber disease, two ultra rare genetic neurodegenerative diseases that lead to premature death in childhood.

Because SMA-PME and Farber disease are so rare, public funding sources are limited.

Our charity, SMA-PME Research, was incorporated on June 11, 2021. We were approved as a 501(c)(3) public charity on February 2, 2022. This means your gift to this public charity is tax-deductible to the extent of the law since no goods or services were provided to you in relation to your contribution.

SMA-PME Research seeks corporations that are interested in matching funds.

The SMA-PME Research Board of Directors has also approved small gifts of appreciation for larger donors. With a contribution of $500.00 to $999.99 USD, a premium tote depicting the company name and one of the children’s photos will be sent to you. For contributions of $1000.00 USD and over, a quality backpack with adjustable straps will be mailed to you. The backpack measures 18.9″H x 13.4″W x 7.3″L, has a separate 17″ laptop or tablet compartment, two easy-access mesh water bottle compartments, and proudly sports the embroidered SMA-PME Research logo.

SMA-PME Research Tote with $500 US Donation*

Premium Zippered Tote with Interior Zippered Pocket for a $500.00 USD Donation*

SMA-PME Research 17″ Laptop Backpack with $1,000 USD Donation*

Quality Backpack with Multiple Interior Compartments and Two Exterior Mesh Compartments for Water Bottles

OR donate by Zelle to hope4adeline@gmail.com

OR Mail a check made out to “SMA-PME Research” to:

SMA-PME Research

P.O. Box 50636

Myrtle Beach, SC 29579

USA

Or, Donate by PayPal `Giving Fund:`

Or, for greatest convenience, but highest transaction fee (borne by the charity) please consider a monthly recurring donation:

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