About the Research & Education Fund

In August 2012, The MAGIC Foundation announced the establishment of The RSS/SGA Research and Education Fund, dedicated to making real differences in the lives of those with Russell-Silver Syndrome and/or born small-for-gestational-age. The Fund was launched with funds raised in honor of Madeleine D. Harbison, M.D., the woman who, more than any other person, has been instrumental in the advancement of RSS/SGA research and education here in the United States. Based on feedback from MAGIC members, the Fund set out with an initial lengthy list of proposed goals for the two-year period covering August 2012-July 2014.

Since that time, we have collaborated with international specialists around the world and accomplished many goals. There now exists a broad range of educational tools for both families and medical care teams on the treatment of individuals born SGA and/or diagnosed with RSS or Temple. We have supported and published numerous new studies, expanded our free clinic at the annual MAGIC convention, provided free written screening summary reports to over 2,500 families, participated in the RSS and SGA Consensus Statement creations, fostered the education of many new endocrinologists in the U.S. and Canada and fought for our children’s rights in our state and federal legislature, just to name a few accomplishments.

There is still much to be done in the future. Imagine new research investigating topics such as the use of aromatase inhibitors to slow bone age advancement and/or health in adulthood. Imagine access to short educational videos on any number of topics... imagine an expanded patient registry where up-to-date information and connections could be made.  And of course, our continued provision of free guidebooks to medical providers, dedicated and experienced volunteers able to communicate with families at any time, free written screening reports to families desperate for guidance, and our annual convention and free clinic.

We have to continue to work together to ensure that all RSS/SGA/Temple individuals have access to the most up-to-date medical information and treatment options available, regardless of their age, where they live, or the size of their household income.  This is all of our responsibility - change will only occur if we work together.

We are a lean, mean fighting machine - we do not need millions of dollars to accomplish a lot.  In fact, most years our annual budget is under $100,000, but we have to keep fundraising.

You can help in many ways:
- Donations of any amount are very much appreciated
- Check with your employer to find out if they will match your donation
- Consider hosting a fundraiser
- Share our good news with your child’s grandparents, and/or close family and friends.

If you have any questions about the Research & Education Fund or its goals and/or projects, email jennifer.salem@magicfoundation.org.