APBD -- A Daughter’s Perspective
Feigy W. Rosenberg -- daughter of the late Gregory Weiss, who founded the APBD Research Foundation (APBD RF) -- shares her perspective on the devastating disease with a heart for helping families affected. Feigy writes, "Some of my earliest childhood memories include play boxing on Saturday mornings in my parents’ bedroom and going for pizza with my dad to Shalom Pizza, down the block from his office. I was that little girl who would sit by the window and wait for her dad to come home from work every evening. Read Feigy's story…
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Dr. Edwin Kolodny Brings APBD into the Light at the Berkshire Jewish Film Festival
Dr. Edwin H. Kolodny -- chair of the Foundation’s Scientific Advisory Board -- recently joined the Berkshire Jewish Film Festival organizers in a special TalkBack interview to raise the public profile of APBD. Dr. Kolodny met with the Festival organizers to discuss a range of topics: the documentary Life Through A Lens, the scope of APBD, the hope on the horizon for people living with APBD…and more!
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Earlier this summer, Susan Coddon hosted a Facebook fundraiser for her birthday and raised $671 to advance APBD research. She shared, "Finding an accurate diagnosis, treatments, and a cure were important to me when my husband LD was initially misdiagnosed with MS. Fortunately, we got to an accurate APBD diagnosis within months and were connected with the Foundation. This community became my lifeline. Since my husband’s passing three years ago, I'm more aware of the time we have -- and don’t -- to find a cure for this devastating disease. It's what motivated me to host the fundraiser." Read Susan's tips for success...
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APBD Research Foundation's Picture of the Month! |
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We closed out July by representing the APBD community in a two-day Community Event hosted by the Chan Zuckerberg Initiative (CZI). Meeting virtually, the 30 Rare As One partners shared their stories, hopes, and experiences ... all to accelerate APBD and rare disease research!
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