A Letter to Supporters and Friends of HD Reach
Helping families with Huntington's disease
by Mary C. Edmondson, MD
Thank you for your generous financial support of HD Reach! Your faith in us makes HD Reach possible. I am so grateful to you for giving us the opportunity to do this good work on your behalf!
What is HD Reach?
Several years ago, I worked with a woman with HD who dedicated herself to supporting HD families. When the time came that she needed help, however, there was none to be found. She needed access to informed medical care and services in order to live a peaceful life with HD, and I couldn’t get it for her. I realized that if I wanted something to change, I had to make it happen. I reached out to family, friends, and the HD specialists in our state and we formed HD Reach to fill the gap in care for people with HD and their families.
HD Reach helps HD families in North Carolina. It’s what we do!
Whatever the problem, we try and solve it. We help HD families get access to effective individualized health care in a timely manner. We connect families with care and support close to home as well as care from HD expert providers. We do the work between doctor visits to implement treatment plans and keep health care team members connected. Whatever is needed, whether its medical care, support services or better skills to live with HD, we are always looking for solutions.
We believe that medical treatment can improve the lives of people with HD, even while awaiting a cure or drug to stop the disease. We collaborate with international groups to improve the quality of healthcare and to stay on top of the latest developments in HD care and research. We provide specialty information and supervision for clinicians who care for patients that are unable to get to the expert clinics at Duke and Wake Forest Universities.
We also connect families together in support group meetings because we think that the most skilled caregivers are family members themselves. It’s a very powerful experience to see a seasoned caregiver teach a new HD family the strategies that can be used to manage symptoms and cope with the uncertainty HD causes.
Here’s why we need your help now:
Yes, we’ve made great strides, but there are many challenges still ahead. North Carolina is a BIG state spanning 500 miles at its greatest length. Getting services to those into rural areas down East and into the mountains is no small task!
1,000 people in North Carolina are predicted to have HD.
5,000 people in North Carolina are predicted to be at risk for HD.
That makes 6,000 North Carolinians living with the disease, not counting their caregivers!
Our motto is: “Access to care for all!”
Here’s what your gifts will make possible in 2016:
–Expansion of services to the very underserved Eastern part of the State
–Improving our outreach efforts to include home and facility visits and family intervention meetings
–A statewide education meeting featuring national experts in HD care and research, to include special programming for HD youth
–An expanded catalogue of HD services by area on the website
–Educational programming improvements
–Expanded training of social workers and support group facilitators
–Improve the services we already provide through quality improvement efforts
–Coordinated family social events to bring together the entire HD community – affected patients, their families, volunteers, board members and YOU, the supporter who makes the HD community possible in your area!
We have a dream...
–To have dedicated care managers in all 5 areas of the state, supported by the HD Clinics at Wake Forest and Duke Universities
–To ensure that tangible help is available to ALL—within an hour’s drive!
You make a difference!
You can also donate online at www.HDReach.org
To make this dream a reality and expand statewide, we need financial support, human talent, new leadership and a deeper skill set in HD Reach….
Please Welcome our New Leaders
Please Welcome our New Leaders
As a first step towards realizing our dream, we are delighted to introduce Ann Lassiter as our first Executive Director. A former member of the Board of Directors, Ann joined us on October 1. She brings over 16 years of business experience creating learning and leadership teams. In addition to her professional skills, she brings the very unique perspective of personal experience as a member of an HD family.
With all the changes ahead, it’s the right time for me to “pass the baton” to a new Board Chair. Beginning on January 1, 2016, Carl Homer will lead an outstanding Board of Directors who give generously of their time, talent and financial resources. In addition to his personal ties to HD, Carl brings extensive leadership experience from his career in strategic planning and physician engagement at Blue Cross Blue Shield of Florida. We have great confidence that Carl and Ann, together with the Board and staff, will guide HD Reach through the challenges ahead. I hope you will join us as we set out to make our dream a reality!
As my time as Board Chair comes to a close, I look forward to a new role with HD Reach as the Medical Director. My job will be to raise awareness of treatment options for people with HD, to bring together health care providers for the HD family community, and to continue to develop HD Reach as an exemplary model of health care delivery.
Thank you again for your support. We will do our best to fulfill your faith in us in 2016!
With Warm Regards,
Mary C. Edmondson, MD
PS. Visit our website for more information about HD Reach www.HDReach.org. I deeply appreciate any help you can give. We need your financial support more than ever! All of the HD Reach programs are financed entirely by charitable donations.