Every year, AccountingDepartment.com donates a portion of its revenue to the Alternating Hemiplegia of Childhood Foundation (AHCF), an organization committed to funding desperately needed research. Alternating Hemiplegia of Childhood (AHC) is an extremely rare neurological disorder that affects less than 800 children in the entire world--of which one is the son of Bill Gerber, Co-Founder of AccountingDepartment.com.
Sean Gerber was diagnosed with AHC before his first birthday, after suffering mysterious and terrifying seizure-like symptoms and episodes that started appearing on just his second day of life. Now 19, Sean is a loving, sweet boy but still suffers from recurring episodes of paralysis, lasting days or weeks at a time.
Much research is needed to help advance the understanding of the causes and treatments for AHC--but unfortunately as it is such a rare disease, it gets little attention or support in larger philanthropy. AccountingDepartment.com is committed to raising awareness and funding to support AHCF and all the children and families living with AHC.
Every year we encourage our friends, families, clients and partners to consider giving a donation in Sean's name to AHCF. You can donate directly by following this link:
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 diseases.
- 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.
These 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. One of the effects of AHC becoming a more recognized disorder, is that it has generated interest with other research teams and subsequently we also have received additional new research proposals that are all tied into our mission to End AHC.
Our children exemplify courage every day fighting this disease through their episodes of paralysis, painful dystonia, and educational and social setbacks. Our families are persistent in caring for their loved ones through these events and daily life. On behalf of Sean and AHC patients everywhere, I am making this leap of faith by asking for your help for our children. Your contribution will ensure our momentum continues through our promising research goals for the year.
For more about Sean's story and AHC, visit AHCkids.org.