ST. JUDES

KNOW YOUR GENETIC

HEALTH HISTORY

The primary area of focus was to educate about the importance of knowing one’s family health history. Knowing one’s health history is critical. If someone is armed with that knowledge, you can proactively take action to better your own health. Unfortunately, awareness of family health histories in the African American community lags behind that of other groups, and there is much work to be done to improve this.

It is estimated that there are more than 7,000 rare diseases, so why focus on hATTR amyloidosis?

Approximately four percent of African Americans carry a specific TTR gene mutation called Val122Ile,1 that puts them at increased risk for developing the disease. Since there are more than 40 million African Americans in this country, the number of people who may have the Val122Ile gene mutation is significant.

Sharing our knowledge related to the importance of health education could improve health disparities. The men of Omega are excited to be Embarking on this partnership together to educate at-risk communities about hereditary ATTR (hATTR) amyloidosis – a rare, inherited, progressively debilitating, and often fatal disease that disproportionally impacts African Americans. For more info, please visit https://blackhealthmatters.com

Through the efforts of the Brothers of the Third District, there were over 160 Brothers/family members/ friends registered, with approximately 90 people attending.

The Objectives Accomplishments:

• Increase patient awareness of genetic testing and hATTR

Amyloidosis (a rare disease) • Improve strategies for the identification, diagnosis, treatment, and management of high-risk patients • Emphasize the importance of genetic health testing and counseling at no cost to qualified participants • Patient Education Liaison (PEL) opened each session and shared Alnylam resources (sponsor of BHM) • Cardiologist (Doctor) presentation on hATTR amyloidosis • Patient Ambassador shared inspirational story of her struggle with hATTR amyloidosis • Q&A for attendees via chat