HD REACH Statewide Education Day Brings Resources and Support for Huntington's Disease Community

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Event shines light on latest research, treatments and assistance and celebrates HD Reach 10th Anniversary

HD Reach is a nonprofit organization dedicated to assisting patients and families affected by Huntington’s Disease in North Carolina to access healthcare, education, and social support in North Caroli

”HD Reach has given us a community of support where there are shared experiences,” she says. “We’re so grateful to connect with others who have the unique understanding of what it is like to live a life with Huntington’s Disease.

On April 6, 2019, HD Reach will host the 2019 North Carolina Huntington's Disease Statewide Education Day at the McKimmon Center at N.C. State University in Raleigh, N.C. (1101 Gorman Street, Raleigh, NC 27606). The event, "Looking Back, Reaching Forward," is also a celebration of HD Reach’s 10th anniversary. HD Reach is a nonprofit organization dedicated to providing access to healthcare, education, and social assistance for patients and families affected by Huntington’s Disease in North Carolina. There is no charge to attend the Education Day.

Huntington’s Disease (HD) is a progressive genetic disorder of the brain. HD causes great suffering not only for those it strikes, but also for their families. Despite promising research and advancements in treatment, medical care for HD patients and their families across North Carolina still remains limited and inadequately supported and coordinated. The annual Statewide Education Day is just one way HD Reach seeks to raise awareness and improve opportunities for those impacted by Huntington’s Disease.

Susanne Young (from Fuquay Varina, N.C.) is a caregiver for her husband Bill, who was diagnosed with Huntington’s Disease at age 74. She cites HD Reach and events like the Education Day as invaluable resources, ”HD Reach has given us a community of support where there are shared experiences,” she says. “We’re so grateful to connect with others who have the unique understanding of what it is like to live a life with Huntington’s Disease. They’re such a great source of information, strength and support that we’re not able to find anywhere else.”

Attendees of the 2019 HD Reach N.C. Education Day will learn about living life well with HD and hear from some respected North Carolina HD experts. There will be breakout sessions for everyone in the HD community including:

  • those living with HD
  • those at-risk for the disease
  • caregivers
  • family members
  • anyone interested in learning more about the disease, diagnosis, treatment and research.

What: North Carolina Huntington’s Disease Statewide Education Day
When: April 6, 2019 - 8:30 a.m. - 4:00 p.m. (Link to full agenda)
Where: McKimmon Center, N.C. State University, 1101 Gorman Street, Raleigh, NC 27606
Who: Speakers and topics include:

Ann Lassiter & Debbi Fox Davis (current and future HD Reach ED’s) - Welcoming Remarks

Dr. Mary Edmondson & Dr. Don Lo - Looking Back Over the Last 10 Years and Specialty Care for At Risk Individuals

Dr. Miroslav Cuturic and Dr. Francis Walker - A Hope Filled Future—Latest and Greatest in Clinical Research

Darcy Hawkins and Casey Herrington - The Future—A Young Adult’s Perspective

Chandler Swope - How Youth Can Navigate Their HD Journey

Ronnie Pulley - Drumming and Wellness

Dr. Bonnie Hennig-Trestman - Talking to Your Children About HD

Holly Edmondson - Mindful Moments

Allison Bartlett - Detangling the Disability Application

Cost: No charge

Those interested in attending the conference can learn more and register for free at the HD Reach website at https://www.hdreach.org/upcoming-events/2019-education-day.html or call 919-803-8128.

HD Reach is a nonprofit organization dedicated to assisting patients and families affected by Huntington’s Disease in North Carolina to access healthcare, education, and social support in North Carolina. Follow us on Twitter, like us on Facebook, and learn more at http://www.hdreach.org

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Ann Lassiter
HD Reach
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