The International Pediatric Stroke Organization (IPSO) is an independent non-profit organization (501c3) of health professionals and scientists worldwide with an interest in pediatric stroke and cerebrovascular disease. Its annual conferences, with both scientific sessions and clinical symposiums, will provide opportunities for multi-disciplinary interactions and collaborations. IPSO members will tackle important research questions, share clinical best practices, and collaborate on projects aimed at awareness, education, and advocacy.
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To the members of PANDA
We are hoping that you can help us with an urgent effort to find patients diagnosed with ataxia-telangiectasia (A-T) and their ATM mutations living in South Africa.
Earlier this year, we began treating one little with girl with A-T with an antisense oligonucleotide (ASO) gene therapy. Now, we plan to treat more patients with A-T in the near future. We are quick assembling a list of all known ATM mutations in living A-T patients around the world, especially since we think we'll have the greatest impact by treating kids as young as possible.
You can help by letting us know about your patients with A-T: age, country, ATM mutations, and the contact information of the physician or researcher who can reach the family. We would also appreciate any suggestions for us to reach additional clinicians or researchers in other countries in Africa who could help with this effort.
You can reach me directly at email@example.com. Thank you in advance for your help with this urgent effort!
Jennifer Thornton, Executive Director
A-T Children’s Project
The A-T Children’s Project is a nonprofit organization in the United States established in 1993. We partner with academic and industry investigators worldwide – organizing and supporting innovative research, conferences, clinical teams, data platforms and biomarkers – to optimize disease management strategies, develop new treatments and find a cure for A-T.