Dear friends, Thank you for joining me in the fight against ALS. This fight is very personal to me, and I am committed to doing all I can to end the suffering caused by this disease and to create a world without ALS. In 2012, I lost one of my closest friends, Rex Williams, to ALS. Rex gracefully and courageously battled ALS after being diagnosed in 2008. During that time, and with the purpose of his life defined, Rex worked tirelessly as an advocate for ALS awareness and fundraising for patient care and research. His courage, commitment and passion in serving others were a testimony and inspiration to all. In 2011, a couple of years after Rex was diagnosed with the disease, I joined the Board of Directors of The ALS Association North Carolina Chapter. I have been serving as Chairman of the Board since February 2016. The North Carolina Chapter serves nearly 800 people living with ALS each year and funds global ALS research. With a commitment to financial efficiency, the Chapter is well-positioned to continue helping all North Carolinians living with this disease. We will continue to do so until there is a cure. The ALS Association North Carolina Chapter is one of the nation’s leaders in pro- viding compassionate care and support to people living with ALS. Late in 2015, the Chapter launched a telemedicine program through the Duke ALS Clinic, enabling people who are unable to attend an ALS clinic to still receive state-of-the-art care. In 2016, the Chapter established a first-of-its-kind telephone support group for people impacted by Familial (genetic) ALS. In addition to supporting multidisciplinary ALS centers throughout the state, loaning wheelchairs and rollator walkers free of charge to those who need them, and providing emotional support for people living with ALS and their caregivers through 15 monthly support groups, The ALS Association North Carolina Chapter strives to ease the financial burden of ALS through its robust financial grant pro- gram. In 2016, the Chapter gave $334,000 directly to people living with ALS to help with uncovered expenses such as home modifications, home health assistance and assistive technology. This is a hopeful time in the fight against ALS. Progress is being made. The ALS Association is currently funding more than 150 research projects around the world. This spring, the FDA approved the use of Radicava™, the first new treat- ment specifically approved for ALS in 22 years. There are several drugs in Phase 3 clinical trials, and we hope there will be more treatment options available soon. Until there is a cure, I look forward to continuing to work alongside you as together we serve, advocate for and empower people affected by ALS to live their lives to the fullest. Sincerely, Letter from the Chairman.................... 2 State of the Chapter............................ 3 Compassionate Care and Support....... 4 Board of Directors............................... 4 Multidisciplinary ALS Clinics................ 5 Global Research................................6-7 Nationwide Advocacy.......................... 8 2016 By the Numbers.......................... 9 Thank you for Making an Impact....... 10 Letter from the President & CEO....... 11 Table of Contents Letter from the Chairman 4 N. Blount St., Suite 200 Raleigh, NC 27601 877-568-4347 www.alsnc.org About Us: The ALS Association is dedicated to improving the quality of life for people living with ALS while leading the fight to find a cure for the disease through research and public policy. The North Carolina Chapter helps nearly 800 people living with ALS each year by supporting the mul- tidisciplinary ALS clinics in the state, loaning medical equipment at no cost, providing financial assistance grants and operating support groups. We will not stop until there is a cure! Leadership: Chairman of the Board: Mark Anthony Vice Chair: Sue Gorman Treasurer: Ed Ketchie Secretary: Denise Kirkland President & CEO: Jerry Dawson Dir. of Care Services & Public Policy: Lisa Hoskins Dir. of Philanthropy: Jackie Suarez Dir. of Finance & Operations: Holly Zahn Mark Anthony Chairman, Board of Directors The ALS Association North Carolina Chapter 2016 Annual Report 2