Season's Greetings,

As many of you who have been with us a while know, I am on a mission to cure a rare disease that has had a tremendous impact on my life, Alternating Hemiplegia of Childhood (http://ahckids.org) a condition that my oldest son Sean was diagnosed with during his first year of life.

AHC has inspired me to do a lot of things, such as start AccountingDepartment.com, the company you know and love today. And every year we make it a mission of AccountingDepartment.com to bring this rare disease to light, update everyone on the past year, and make a plea to help fund much needed research. And this year, I’m especially excited to share that research we’re funding is closer than ever to finding a potential cure. (https://www.accountingdepartment.com/ahc)

Entrepreneurs learn a lot about the power of vulnerability and how important it can be to advancing purpose and missions. Today I’m asking you to consider making a donation of any amount to help fund research that may cure AHC, providing a better quality of life for my son and those like him, and ensuring new diagnoses of AHC have better, more successful treatment options from the outset.

I’m not going to overwhelm you with the details but here are important projects currently funded:

• The AAV Gene Therapy project, 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
• Natural History Database of AHC patients (the universal standard for research) is in development at MGH/Harvard University. Its purpose is 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 other related research.
• Our Gene Editing Project seeks a gene therapy through a different avenue. Instead of replacing genes, we would be EDITING the errors like a word processing program. Working with David Liu of Harvard, a world leader in this technology, we hope to get to the correction from a different or complimentary angle.
• Knock Down the Mutant Gene - Through Northwestern University and Dr Alfred George, our foundation independently is funding a third gene project. This project would knock down the mutant gene and allow the normal copy to take over. We hope to answer the question, “dose the mutant overwhelmingly prevent the normal gene to perform the duties? OR does the function require both copies of the gene to be normal?”
• CBD oil is 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.

Thanks in advance and have a great 2022

Through research, education, and family support, we have ONE MISSION: END AHC.

Through these three pillars of our mission, the AHC Foundation works to provide our community support and hope as we all move through this journey. Funding RESEARCH from small studies to gene discovery, to collaboration on landmark gene therapy that holds much potential; providing EDUCATIONAL resources to families through support groups, introductions to physicians, and our website; SUPPORTING FAMILIES through our support group, biennial family meetings, and availability of volunteers for crisis; are all ways the AHC Foundation works to END AHC. 

Join us in fundraising to continue to provide resources to families, fund research with high potential, and raise awareness of this rare disease.