*All hands on deck as we continue our pursuit of better treatments and a cure for AHC. We invite you to check out the following ways you can be part of the excitement. 
Cure AHC believes the lives of those who suffer from Alternating Hemiplegia of Childhood and their families can be improved as we come together in search of better treatments and ultimately a cure for this debilitating children’s neurological disorder. You have talents that can make a BIG difference in our efforts, without hurting your pocketbook or putting undue stress on your daily routine! We invite you to check out the following ways you can be part of the excitement (note the estimated time for each task).
Board Member
Cure AHC’s mission is threefold- to find the likely thousands of undiagnosed or misdiagnosed patients in the world, to dramatically improve quality of life for all those with alternating hemiplegia of childhood, and to fund research to get to the cure. Cure AHC envisions a world where alternating hemiplegia of childhood no longer robs its sufferers of the chance to participate fully in life, and where no case goes undiagnosed for lack of awareness. Alternating hemiplegia of childhood is a neurological disease that causes temporary bouts of paralysis lasting up to days at a time and affecting one or more parts of the body, often alternating sites. Those suffering from AHC also have
- Movement problems like Cerebral Palsy
- Learning challenges like autism
- Behavioral issues like ADHD
- True Epilepsy in at least 50% of cases
Researchers understand the genetic root cause of nearly 80% of AHC cases. They are confident that with the right resources a cure is within reach in the next 5-10 years.
The Cure AHC Board member supports the mission and vision of Cure AHC via the following activities
- Regular attendance at monthly board conference calls (90 minutes/month)
- Respond to email requests to review/vote on business items for Cure AHC in between board meetings (approx. 90 minutes/month)
- Participate in the volunteer needs of running the business of Cure AHC (as skills permit- 7 hours per month)
- Contribute financially to the mission of Cure AHC annually in the amount of at Least $10,000 either personally or through the member’s network of influence
- Make a commitment of 2 years of service
To that end, we seek an individual with enthusiasm for service to children and adults suffering from disease, who has a good network of contacts, and the skill set of fundraising. We have a well defined strategic plan,have a number of key research publications from the research we have funded, have helped diagnosed many new cases, and have helped improve quality of life for those with AHC around the world. We are a global charity based in the USA with board members in 4 countries. To request more information, or to get started on one of these, please email jeff@cureahc.org
Seniority Level – Executive
Industry
- Capital Markets
- Computer Software
- Executive Office
Employment Type – Volunteer
Job Functions
- General Business
- Business Development
- Marketing
Newsletter Coordinator
Seeking a volunteer to create content for, and manage a monthly newsletter for the organization.
Cure AHC Ambassador (5 hours per month)
Have the gift of gab? Like networking? Then this one is for YOU! In nearly every town & city there are networking events, speaking opportunities and expos that are prime opportunities to spread the word about what we are doing at Cure AHC & potentially attract supporters/donors. We can empower you with the materials & talking points you’ll need to tell the Cure AHC story.
Blogger (1 hour per week)
Like to write about your experiences as a sufferer of Alternating Hemiplegia of Childhood, or as the parent, sibling, caregiver, or friend of an AHC sufferer? Here is your chance to let your writing skills shine! The more informative content we have on our site, the better we will be at attracting supporters and donors, and the more will be able to provide as far as knowledge for those dealing with this disease. We will provide you with ideas and tips for writing an intriguing, engaging and successful blog.
Parent Panel (1 hour per week)
This position is great for our parents of older children and adults who suffer from Alternating Hemiplegia of Childhood. You have a wealth of experience in dealing with the disease and its myriad of challenges. Each week we’ll present a topic & give you the opportunity to share your perspective on the item during a podcast-type segment. This way we capture some great knowledge in an easy to search and share format to help all our families improve their lives.
Fundraising Committee (1-3 hours per week)
Are you good at planning and organizing? Then you will LOVE this opportunity. Cure AHC has come up with several great ideas for fundraising campaigns. You will be an integral part of turning them into reality! This committee will work to scope out the logistics and budget needs for each of the campaigns we have in mind, determine which ones are viable & execute the ones we want to pursue. Naturally we will partner with you to ensure your success!
To request more information, or to get started on one of these, please email jeff@cureahc.org
*We are a volunteer-only organization, global in focus, based in the USA. Our board of directors is 15 in number by our by-laws. We meet via conference call once per month, currently on the 2nd Saturday of each month at 9 AM EDT/EST with about 90 minutes duration. We have an expectation of at least 10 hours of volunteer work on behalf of Cure AHC per month and an annual financial commitment of at least $10,000. Our fixed expenses are typically under $10,000. We have no paid employees, but occasionally engage with consultants for specific projects (such as event planning, strategic planning, awareness marketing). The board functions as volunteer staff, along with a volunteer team of about 50 standing volunteers and a variety of situational volunteers