FAQ

Why did you form Cure AHC? What is your Mission and Vision?

MISSION STATEMENT – Cure AHC was created in order to raise funds necessary to facilitate research aimed at treating and ultimately curing Alternating Hemiplegia of Childhood (AHC). We do this by partnering with physicians and organizations worldwide and supporting families who live with AHC every day. By bringing together donors, researchers and families we believe a cure for AHC is within reach.

VISION STATEMENT – Cure AHC envisions a world where Alternating Hemiplegia of Childhood no longer robs its sufferers of the chance to participate fully in life. We seek a time where no case goes undiagnosed for lack of awareness. We believe that collaboration is critical for those suffering now, and for those yet to come.

How are you different from other AHC organizations?

Rather than focus on our differences, we choose to focus on our common passion to seek more effective treatments and ultimately the cure for AHC. Many AHC organizations are formed by a group of impassioned parents and family members of AHC sufferers. We all have the same objectives and share a passionate commitment to advocate for our AHC sufferer until our mutual goals are achieved. Each AHC organization has a unique personality, focus and skill set. Cure AHC was formed by parents of AHC patients, like so many others. We are committed to work with all AHC organizations worldwide, the families, researchers, doctors, legislatures and any group or persons that could help us achieve our goals.

While we are based in the United States, our aim is to act as a global facilitator of connections & collaborations that can help to get answers now for all AHC sufferers and their families while we also press on to finding the cure for AHC. We also see the value of being at the forefront of promoting awareness for rare diseases in general, which is why we will actively work with organizations such as Global Genes, FasterCures, Rare Disease Legislative Advocates (RDLA), & NORD (the National Organization for Rare Diseases). While Alternating Hemiplegia of Childhood may be a 1 in a million disorder, we see the importance of joining forces with rare disease organizations in order to leverage awareness, relationships, research and fundraising.

Why a separate organization from any of the existing ones? Won’t that dilute the limited financial resources AHC organizations already have?

We have chosen to work closely with Duke University, the first to discover the ATP1A3 Mutation, and the current main drivers of worldwide collaborative research on AHC. Having our organization based in North Carolina will afford us fundraising synergies that would likely not be possible otherwise. Our goal is to enhance the current fundraising power and awareness efforts for AHC by finding new and larger resources through forging a variety of beneficial, worldwide partnerships. We encourage anyone to fund any AHC organizations as they see value in doing so, and will not advise anyone to discontinue or refrain from donating to any group. There is much work to be done on the path to the cure for Alternating Hemiplegia of Childhood. Every AHC organization offers value in this effort. Cure AHC brings another voice and committed effort to improving the lives of all AHC patients around the world.

Could the cost of running your organizations take away from the money that could be used for research?

Cure AHC has no paid staff and is a 100% volunteer based non-profit organization. Aside from initial, minimal start-up costs of a non-profit, which were paid for by personal donations from our Board of Directors, any overhead costs will always be kept at a minimum. We believe that the Cure AHC organization offers many opportunities to augment and support worldwide efforts at combatting Alternating Hemiplegia of Childhood.

Will you fund other researchers besides Duke University?

Our goal is to collaborate and partner with anyone who can clearly demonstrate that their proposals will facilitate finding answers to improve the everyday lives of AHC sufferers and their families, help find the cause of AHC in those who do not have the ATP1A3 gene mutation, and further research towards treatment and ultimately the cure for AHC, as advised by our Board of Directors and our Medical Advisory Board. As funds are raised and research grants received, we will publish our disbursement of funds for the projects we support.

How will you make sure to not waste resources by duplicating efforts with other AHC organizations?

Efficiencies and more effective use of research funding are some of the important benefits of our global approach. By working closely with the AHC Federation of Europe, whose member association leaders have welcomed Cure AHC into the community, we hope to help harness the world’™s resources to treat and defeat AHC. We will strive to avoid duplication while seeking new efficiencies that will enhance our capability to find some of the concrete answers we all seek for our AHC sufferers.

A key to success for other rare disease organizations has included their involvement in global initiatives. Cure AHC plans to capitalize on those successes by learning as much as we can from successful organizations and applying those strategies where appropriate, to our efforts to treat and cure Alternating Hemiplegia of Childhood.

Do you know if Duke University and University of Utah share research findings or do they work on separate studies?

Cure AHC does not represent any research facility or other AHC organization. There are many researchers working globally that are involved in projects involving AHC research. Duke University is part of an international collaboration of researchers, and Dr. David Goldstein of Duke University, is one of the Chairs of the 2nd Symposium on ATP1A3 in Disease taking place this September in Rome, Italy. Cure AHC is a member of the Organizing committee for this groundbreaking, collaborative and critical gathering of global researchers and patient advocates for AHC. Both Duke University and University of Utah, among others, are part of the scientific committee for this event and will present during the sessions. We suggest you contact any research facilities directly with any questions you may have about their practices and policies.

Will Cure AHC fund research teams with other AHC organizations?

While Cure AHC is based in the USA, we view our organization a global initiative whose mission is to help all AHC groups and researchers to find ways to better work together and to avoid duplication where possible. We invite input from AHC families and will be clear and transparent in our course of action and intention. Our efforts aim to serve the AHC community worldwide, and we are happy to work with and share resources with anyone who wishes to partner with us to achieve our goals of creating a better quality of life for AHC sufferers now and ultimately discovering the cure for AHC.

How can I make a donation to the Cure AHC?

There are several ways to make a donation. To make a secure donation online, please visit CureAHC.org/Donate. You may also call us directly at 919-488-4217 or mail your donation to:

Cure AHC, Inc.
545 Irina Drive
Rolesville, NC 27571

Whom can I contact if I have a question about my donation?

Please submit your question through our Contact Us Form and we will be happy to forward it to the appropriate department.

Can I make a secure donation on Facebook?

Yes. Click on the Donate Today icon under the main cover image. Click on Donate and you will be directed to our secure PayPal donation page. You do not have to have a PayPal account to make a donation to Cure AHC.

How will my donation be spent?

With the opening of the new Duke AHC Clinic and the many benefits for AHC patients, their families and the potential to collect quality research data, funds that are raised are earmarked to aid in sending as many families as possible to receive a thorough, multidisciplinary evaluation and custom care plan at the Duke AHC Clinic. If you would like to apply for aid to attend the Duke AHC Clinic, please use the form on our Contact Us page and we will contact you by phone.

Awareness is an important aspect of our mission. We will focus funds to ensure many more doctors, researchers, caregivers, and members of the general public are aware of AHC, so as to reach the undiagnosed or misdiagnosed cases, increase funding for research and treatment and enlist new partners that could speed us along in our journey.

We are also committed to raising funds to support appropriate research projects as recommended by our Board of Directors and our Medical Advisory Board, along with input from AHC families and our sister organizations around the world.

Are my donations Tax Deductible? How can I get a tax receipt for my donation?

Cure AHC has applied for, and expects to receive, the 501 C3 designation from the IRS in the near future. While we cannot control the speed by which the IRS operates, by law once we receive the designation, it is retroactive back to 18 months. Our legal advisors tell us that the process generally takes 3-6 months to approve (we anticipate having the designation sometime in 2013 so that donations made now would be declared tax deductible before you would file your 2013 taxes). We have mechanisms in place to track the donations received which will automatically issue tax receipts when we receive the designation.

How can I get involved or volunteer with the Cure AHC?

Anyone anywhere can join our fight against AHC. You can volunteer or participate in our events if you are local to them and if not, you can help by sharing our event information on social media, email and amongst your peers and coworkers, join our online campaigns, host a fundraising event that benefits Cure AHC and much more. Contact us at info@CureAHC.org to learn more about the different ways you can get involved and take action.

I would like to host an event that benefits Cure AHC.

Individuals who would like to host an event that raises awareness or funds for the Cure AHC are encouraged to contact us at info@CureAHC.org for support and guidance. We will provide a number of tools to assist you in your fundraising. These tools include a fundraising logo, media kit (which includes a sample press release and sample solicitation letters) and informational pieces you can provide to people who might want to donate through you. You also will have access to a personal fundraising page where donors can contribute to your efforts online.

I would like to find support resources for myself, a loved one or a patient or client who has been diagnosed with Alternating Hemiplegia of Childhood.

Cure AHC provides free, confidential, one-on-one support to anyone affected by AHC through our Family Support Center. As parents of AHC sufferers, we know the struggles families face in caring for their AHC patient. We want you to know you are not alone! If you need to reach us with a question, a comment, or just someone to talk to, please contact Stacie Confair, our Family Support Leader, at stacie@cureahc.org, Renee Wuchich (our Co-founder) at renee@cureahc.org, or Jeff Wuchich our Co-Founder and President at jeff@cureahc.org.

I would like to share my story with others who have been affected by AHC.

We encourage you to share your story and photos. There are many ways to share your story with the Cure AHC community by emailing us at info@CureAHC.org, and by using our social media outlets such as Facebook, Twitter, Google+ and YouTube. Please visit Connect With Us at the bottom of our homepage at www.CureAHC.org to learn more about how to stay connected with the Cure AHC community.

Epilepsy (or) Seizures and AHC

Seizures or epilepsy would mostly be the first diagnosis of kids with AHC as about 50% of them actually have epilepsy. However almost all of them, even the ones who do not have epilepsy, are initially misdiagnosed for epilepsy alone. The epilepsy could be in the form of generalized or one sided stiffening (tonic) and or rhythmic shaking (clonic) activity. It also can take the form of staring and unresponsive seizures (complex partial seizures).

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