Matching Grant Challenge

The first $100,000 of 2020 will be matched by a generous donor!

The Poarch Band of Creek Indians of Alabama have awarded us an opportunity to make a huge impact on the future of our children. Their generosity to this rare disease community exemplifies their community mantra: Many People. One Purpose. We are honored to be their partners in our mission to END AHC.

Learn more about the Porach Creek Indians through this brochure.

What will the funds do?

Through the work of volunteers over 25 years, we are closer than ever to finding a treatment or cure for our rare disease. Several inter-related projects currently underway provide great optimism, and need further funding. Several more projects offer hope to an immediate improvement in daily life while we pursue permanent treatments. We continue to pursue and consider research grants that contribute to the understanding and treatment of AHC.

1. The AAV Gene Therapy project is a collaboration of several patient organizations. It is designed to provide a gene correction to the neuron cells affected. This would be a permanent correction! This effort is currently in the Proof of Concept phase. AHC mice will be injected this winter with the correcting virus vector, and we hope to establish a strong case to the National Institutes of Health to proceed to the Toxicology phase and on to clinical trials. Further, the method we are developing can have broader application for other gene therapy development in other disease.
   Learn more about the AAV Gene Therapy Project here
2. A Natural History Database is in development at MGH/Harvard University to assist with the current and future research needs of all in the ATP1A3 community. Further funding of this effort is needed to complete it in time for the AAV Gene Therapy trials, and for research. Accelerating this with additional man hours would be the focus of funding this beyond the grant request.
3. More work is needed to fully understand the fundamental defects responsible for AHC at the molecular and cellular levels. Researchers at Vanderbilt and Northwestern Universities are using induced pluripotent stem cells (iPSCs) derived from children with AHC to generate neurons. These AHC patient neurons are being used to answer two important unanswered questions about the disease:
   1) Is the fundamental mechanism in AHC that of haploinsufficiency or involve dominantnegative
   effects?
   2) Do ATP1A3 mutations associated with distinct clinical disorders exhibit functional differences at the molecular and cellular level?
   The answers to these two questions will guide how future therapies, including gene therapy, need to work in order to correct the underlying molecular and cellular defects in AHC. The unique
   iPSC models developed by this research team will also enable testing of therapies for both common and less common ATP1A3 mutations to ensure that new therapies will benefit all persons with AHC.
4. CBD oil is also a promising daily regimen for patients of many diseases. Some of our AHC families have been experimenting with CBD oil and have had varying results. The AHCF would like to advocate for our patients by formally studying CBD oil in our specific patients with control over the variables. This will help us determine if CBD oil is a symptom relieving treatment in which our families should invest for an improvement in their daily quality of life.

These inter-related projects and their subsequent research have a price tag of nearly 1.8 million dollars; a heavy lift for any volunteer organization. Our projects currently under way and immediately planned are projected to cost the foundation $435 thousand in the next year.

How you can help

Donate through AHCkids.org during 2020.

Donate by mail by sending a check to:
Alternating Hemiplegia of Childhood Foundation
2000 Town Center Suite 1900
Southfield, MI  48075

Spread the word on social media.
Like the AHC kids Foundation Facebook page and
share the updates with your networks.

Customize this Word Document and print it out to pass around your office or your family!
Customizable Word Document

Download and print this PDF to distribute in your neighborhood
Click here to download PDF

Tell your own story and raise funds in a way that connects with your networks by having your own fundraising page.
Create your own AHCF fundraising page here:
https://ahckids.z2systems.com/np/clients/ahckids/createFundraiser.jsp?campaignId=6&teamId=null

Create an event!
Host a 5k, Golf Outing, dinner at your favorite restaurant, karaoke night, or just run for a cure! If you are feeling inspired, great! Need help getting going? We are here. AHCF is developing tool kits to get started, and they will be posted soon. Until then, contact us, and we can provide online tools in addition to our 25 years of experience fundraising at this grass roots level.