Volunteer

Save lives by supporting the mission of Cure AHC

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.

We invite you to check out the following ways you can be part of the ongoing search for a cure:

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 find a cure. Cure AHC is dedicated to creating a world where this disease no longer robs its sufferers of the chance to participate fully in life, and where no case goes undiagnosed for lack of awareness. AHC 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 passion for service to children and adults suffering from AHC, who have a good network of contacts, and the skill set for fundraising. We have a well defined strategic plan, a number of key research publications, research funded, and many successful cases diagnosed through our network. We are also proud to help improve the quality of life for those with AHC around the world every day. We are a global charity based in the USA with board members in 4 countries. To request more information, please email info@cureahc.org

Seniority Level – Executive

Industry

  • Capital Markets

  • Computer Software

  • Executive Office

Employment Type – Volunteer

Job Functions

  • General Business

  • Business Development

  • Marketing

Newsletter Coordinator (5 hours per month)

Seeking a volunteer to source and create content for a monthly newsletter for the organization.

Cure AHC Ambassador (5 hours per month)

Like networking? 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 to attract supporters/donors. We can empower you with the materials and talking points you’ll need to tell the Cure AHC story.

Blogger (1 hour per week)

We are looking for a volunteer to write about their experiences as a sufferer of AHC, or as the parent, sibling, caregiver, or friend of an AHC sufferer. 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 knowledge for those dealing with this disease.

Parent Panel (1 hour per week)

This position is suited to our parents of older children and adults who suffer from AHC. You have a wealth of experience in dealing with the disease and its myriad of challenges. Each week we’ll present a topic and 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? 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 and execute the ones we want to pursue.

To request more information, please email info@cureahc.org

Note: 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 for 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, and awareness marketing). The board functions as volunteer staff, along with a volunteer team of about 50 standing volunteers and a variety of situational volunteers.