ROBIN

At 16 years of age, Robin was an accomplished violinist and had just won a major regional competition when she came down with flu symptoms. Severe fatigue and weakness followed, and she could no longer attend school. A year later she was finally diagnosed with AMD.

Robin’s condition continued to deteriorate and just when she was about to give up her violin studies, she was selected by Very Special Arts to perform as a national Panasonic Award winner at the Kennedy Center in Washington, D.C. She took this opportunity to travel to North Carolina and New York to visit specialists recommended by AMDA. Under their guidance, Robin started using a Bi-Pap ventilator at night and went on a special diet and exercise program.

In the following year, Robin gained more than 15 pounds and gradually regained some of her strength. As Robin could no longer commute long distances regularly, she moved 90 miles to live near a university hospital and her music activities.

Today, Robin is finishing high school through a public school home tutor and continuing her musical pursuits. She recently won the honor to perform as a national Yamaha Young Artist. She serves as concertmaster of her orchestra and plays first violin in a string quartet which has performed for President Clinton among numerous other engagements. Robin is planning to go to college and hopefully waiting for the upcoming enzyme replacement therapy.

– Robin’s mother

WE NEED YOUR HELP!

To further research into Pompe Disease, as well as support Pompe patients around the world, private funds must be raised. If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:

AMDA (Acid Maltase Deficiency Association)

P.O. Box 700248
San Antonio, Texas 78270-0248
Phone: 210-494-6144
Email: info@amda-pompe.org

 Acid Maltase Deficiency Association

GET INVOLVED

Your generous contribution will go a long way into improving the quality of life of Pompe Disease Patients worldwide. Donations go towards Pompe Disease Research.

If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:

(210) 494-6144

info@amda-pompe.org

AMDA

PO Box 700248

San Antonio, Texas 78270 USA