Guest: Angel Male
Presenter: Neal Howard
Guest Bio: Angel is a caregiver to her family, many of whom have been living for generations with hereditary ATTR (hATTR) amyloidosis, a life-threatening condition that impacts 50,000 worldwide. Although Angel tested negative for the gene mutation that causes hATTR amyloidosis, she remains an advocate for the members of her family living with the condition, including her mother. Angel and her family have partnered with Alnylam Pharmaceuticals to share their personal account, “Living a Rare Life,” to raise awareness of this complex condition and encourage those who may be affected to get a diagnosis and learn more about it.
Segment Overview: Angel, a caregiver and family member featured in a new book “Living a Rare Life” shares about how her family was plagued for years by fatigue, nerve pain and cardiomyopathy, but unable to figure out why – She lost her grandfather and great uncles to the condition – what the diagnosis of hereditary ATTR Amyloidosis meant for her family, and why she wants to raise awareness and educate about the new “Bridge the Gap” initiative and the resources for patients and their families. (www.hATTRbridge.com)