Giving Tuesday (December 3, 2024)
In memory of Scott's birthday season, I am starting my annual fundraiser to benefit the Pheo Para Alliance (PPA).
This year, I joined the Pheo Para Alliance's Board of Directors and have seen firsthand how the Pheo Para Alliance provides valuable information and resources to patients and families. This includes the Pheo Para Center of Excellence Program, which allows patients to find hospitals that are experienced in treating pheo/paras (critical when dealing with a rare disease), as well as virtual and in-person seminars with the world's leading experts on the latest research and treatments.
This year was also the first time that I went to Capitol Hill on behalf of the Pheo Para Alliance to advocate for rare disease legislation with our Congressional representatives. While it's easy to be cynical and think that nothing gets done in Congress, rare disease legislation is one of the few remaining issues that still gets bipartisan support. The RARE Act (https://matsui.house.gov/
For Giving Tuesday, I hope you will consider donating to the Pheo Para Alliance. This year I will match each dollar of donations, up to a maximum of $1,000. I'm doing this because this is a cause that is dear to my heart, and I know that the money will be spent wisely. This fundraiser will run from Giving Tuesday until Scott's birthday on December 21. Your support would mean a lot!
Pheo Para Alliance website: https://pheopara.org/
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