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2016 Top-Rated Nonprofit

Cure AHC- Alternating Hemiplegia of Childhood

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Epilepsy, Health, Nerve, Muscle & Bone Diseases

Mission: 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. 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.

Results: • Charter Organizer of the 2nd Symposium on ATP1A3 In Disease • Participated in Rare Disease Day Lobby Effort in Washington, DC • Launched Interactive Website www.cureahc.org • Co-Launched the Duke Children’s Multi-disciplinary AHC Clinic • Actively Participating in Several Key Partnerships • Held 6 fundraisers (with more to come) raising over $25,000 • Supported the Symposium and attendance of researchers from Duke & Harvard *Hosted the 4th Symposium on ATP1A3 in Disease, * major funder of AHC Documentary, * hosted Family Gathering, * Funded published research of mouse model of AHC, *helped dozens of families come to the Duke AHC Clinic

Target demographics: sufferers of Alternating Hemiplegia of Childhood have a better quality of life now as we strive simultaneously find a cure for AHC

Direct beneficiaries per year: Hosted the 4th Symposium on ATP1A3 in Disease, major funder of AHC Documentary, hosted Family Gathering, Funded published research of mouse model of AHC, helped dozens of families come to the Duke AHC Clinic

Geographic areas served: the whole world

Programs: Duke AHC Cinic, Medical Research funding, AHC Documentary funding and facilitating, Family Gatherings, Medical Symposia, Podcasts, Advocacy with Schools, caregivers, insurance, government

Community Stories

54 Stories from Volunteers, Donors & Supporters

Cory G.1

Client Served

Rating: 5

Cure AHC is a much deserved leader in the AHC Community.

They not only provide much needed financial support for those seeking a cure for AHC they also provide much needed mentoring and a community that ensures our child (and us as caregivers) do not have to do it alone.

Since our daughter was diagnosed Cure AHC has assisted us with gaining a better understanding of our daughters condition as well as being an advocate in helping us navigate the hurdles associated with caring for someone with AHC. They have provided mentorship and support for our clinicians and have served as a conduit for them to share information with their peers. They are a truly amazing organization and fill a very critical role in the care for those with AHC.

Thank you Cure AHC for leading the way to a cure, for being our voice, and for making sure our families are provided the knowledge and tools to provide our Heroes the best possible care.

Client Served

Rating: 5

My son was diagnosed with this very rare disorder and I reached out to this organization just trying to find a place to start. I was overwhelmed with support, help in answering questions and people who understood the path we were on. Especially for people with such a rare disease, organizations like these are so important. There truly is no information available in other places. Even most doctors are unfamiliar with AHC, so this organization is such a support and help. Thank you for the bear and for the outpouring of support and help!

Client Served

Rating: 5

When our child was diagnosed with AHC, it was overwhelming trying to navigate information, doctors and treatments. Cure AHC was a great resource for all of the above along with having someone to meet with and talk to while we visit the multiplanary clinic at Duke. Ive had panicked questions answered, help with appointments and letters for equipment. Cure AHC and the research they fund, makes this journey less lonely, less difficult, and offers hope.

Donor

Rating: 5

I first connected with Cure AHC through my granddaughter whose friend in Iceland, Sunna Valdís Sigurðardóttir (see her beautiful photo below), is the only person in Iceland with AHC. AHC helped fund and create Águsta Fanney's AHC documentary, "Human Timebombs," which has raised worldwide awareness of AHC.

Cure AHC has created a global community of families dealing with AHC, raising awareness and research funds for this rare disease at institutions like Duke University.

Through Amazon's "smile.amazon" program, I continue to donate to Cure AHC -- for every purchase I make from Amazon by opening the "smile.amazon.com" page and ordering from there, Amazon donates to my charity of choice -- "Cure AHC Foundation" -- at no cost to me: (https://smile.amazon.com/gp/chpf/about/ref=smi_se_abtpo_r_about_smi).

Cure AHC is among the foremost charities dedicated to finding a cure for Alternating Hemiplegia of Childhood, and they do a fantastic job for children and families dealing with this pernicious and debilitating disease.

Sue_150

General Member of the Public

Rating: 5

I see how active this charity is in the lives of all the families dealing with AHC. Their care, and availability is unfounded. The research they have been able to accomplish towards a cure for this rare disease, and their commitment is amazing. I see a bright future for these kids because of this charity's tenacity.

Client Served

Rating: 5

I could not ask for a better organization like CureAHC. They are like my family. The amount of time they put in and love they share for all our kids with AHC is magnificent!! The hard work they put in day in and day out to help make the lives of all who suffer from this diesease is incredible and without them the Duke AHC Clinic would not be here. Thank you CureAHC for everything you have and still do for a Cure for AHC and all the AHC Families. We love you!!!!!!

tgbears

General Member of the Public

Rating: 5

Cure AHC is one of those rare foundations that has the ability to see each child and their family with individuality and great empathy. The manner in which they provide support to those dealing with this horrible condition while at the same time continuing the quest to find a cure is nothing short of amazing. I am honored to be connected with them.

Donor

Rating: 5

This is a great charity that creates a community "family" - frequently sharing pictures, birthdays, stories, and prayers for each other. Love being a tiny part of this great group!

General Member of the Public

Rating: 5

What a wonderful group to be a part of. Just being able to have questions answered from other parents with the same problems is so helpful and reasuring. If I didn't have this organization I would be lost for what to do with my daughter Gayle Jane! ❤

Amber102

Donor

Rating: 5

This Charity is amazing at keep families together to learn about the twist and turns of AHC. The information is immediate and honest.

Volunteer

Rating: 5

What a great nonprofit to volunteer for! A great sense of community and friendships that make me want to volunteer again!

1 Melissa335

General Member of the Public

Rating: 5

This disease has taught me so much.. My granddaughter Molly Marshall has AHC and all of the people that are wonderful and will do anything to help to understand the disease more.. they are learning more each day and hopefully one day will find a cure..

Comments ( 1 )

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Jeff65 10/25/2016

Thank you so much for your kind words! We at Cure AHC love dear sweet Molly! She inspires us to greatness daily!

Sandra Y.

Volunteer

Rating: 5

This is a great organization. I have volunteered for Cure AHC for over 3 years.

Comments ( 1 )

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Jeff65 10/25/2016

Thank you Sandy , we are grateful for all that you do to help us raise awareness and funds to get to the Cure!

Previous Stories

Volunteer

Rating: 5

I have had privilege to work on projects with Cure AHC , as well as benefit from the vast resources they have available for families, professionals, etc. I am impressed with the dedication of the organization's staff and volunteers. They truly care about making a real difference in the lives of people that are affected by this disorder.

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General Member of the Public

Rating: 5

Cure AHC is a wonderful inspirational charity that provides all of us with information that without this charity we would have little or non advice/ support at all

Comments ( 1 )

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Jeff65 10/25/2016

Thank you so much for your testimonial to our hard work!

1 James210

Professional with expertise in this field

Rating: 5

I'm a professor of medicine at Vanderbilt, and first became aware of Cure AHC a few years ago as they were organizing some of their first genetic work.

It's a rare disease, which makes it hard to study, but these guys are doing everything right. Unlocking the genetic origins of disease is a first step to finding a cure.

Comments ( 1 )

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Jeff65 10/25/2016

Thanks James for your support!

Client Served

Rating: 5

Cure AHC is an amazing resource and support for families of children who have been recently diagnosed with AHC. It was a relief to know we are not alone. Their tireless involvement makes a difference in the lives of many!

General Member of the Public

Rating: 5

Cure AHC is a great group. They have put forth great effort in organizing events. They have made it possible for families to go to Duke University and get countless analysis and medical advice in the effort to collect data to further understand this disease.Their most recent was a great success bringing together families who are affected and doctors who are currently trying to find a solution. The gathering was very informative and is a great step for future success in this battle.

Client Served

Rating: 5

Cure AHC is a great support and resource for those people and families who suffer from AHC.

Volunteer

Rating: 5

Hi:) Cure AHC is a wonderful organization who is extremely dedicated to helping children all over the world. Last year when my family hosted a fundraiser, I chose to donate to Cure AHC because I like the work they are doing for all the kids. I was called out by different organizations as to why I chose them, (which quite frankly I didn't need that extra stress), but I bluntly informed them that I chose Cure AHC because as far as I'm conserned they are the ones doing the work. Even though my daughter who sufferes from AHC and I live in Canada, I felt Cure AHC was the choice for us to help with what we could. Sometimes it takes a study of a few kids to figure out any kind of loophole in this horrifying desease, and that's exactly what Cure AHC is doing to benifit all the children. They have a wonderful team trying their best and I applaud their hard dedicated work:)

Previous Stories
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Volunteer

Rating: 5

I just want to thank you for your constant drive to help our kids. As a single mother with a whole bunch of responsibility it's nice to know people are out there fighting to make all our dreams come true.

Melissa208

General Member of the Public

Rating: 5

Cure AHC provides a much needed resource to families whose lives are changed with the diagnosis of Alternating Hemiplegia of Childhood. While physicians and researchers work hard for a cure, it is this group where families find comfort and support. As we wait for a cure, it is through this group we connect with one another to ask questions, get ideas and gain insights into our affected loved ones. Questions answered in this group are often more helpful than answers we find through our physicians. We are the experts in this disorder. We live it every day. Having this group for discussion and networking, alleviates some of the frustration that comes with living with a rare disease. That is a blessing.

Donor

Rating: 5

CureAHC is a great nonprofit that provides vital support and services to families who have nowhere else to turn. Rare conditions like AHC don't get the backing that the more commonly known conditions get, so supporting CureAHC is a way to make a huge impact on people that need it. I've seen the impact CureAHC has had on families that were desperate for help. They give hope and are THE driving force for medical advances and a cure.

General Member of the Public

Rating: 5

Cure ahc has been a fantastic resource for me since my daughter annya was diagnosed with ahc last year. It has allowed me to be in touch with other families all over the world which, although far away feels like im not alone in this! Thankyou to jeff for his devotion to the cause! Jx

General Member of the Public

Rating: 5

Such an amazing organization run by people who truly care and put their heart and soul into this. They have brought so much awareness and help families wherever they can.

Jenna27

General Member of the Public

Rating: 5

Cure ahc has been a life line I so desperately searched for after our diagnosis. The endless support given from all over the globe is truly amazing, me and my son are so grateful for this amazing group & all the other parents/ahc champions :)

Britt9883

Client Served

Rating: 5

CureAHC has been a miracle worker in our lives!! My son Tanner is 14 months old, diagnosed with Alternating Hemiplegia at 8 months old. I was thrown 3 papers from his doctor with his diagnosis and she left, leaving us with countless numbers of questions, worries, fears, struggles, unknowns. Cure AHC is there for me and my family whenever we need questions answered, advice given, ears to listen, and peace of mind that we are never alone. The amount of time dedicated to the families is unimaginable, and I am forever grateful for this organization!!!! Thank you, beyond words, to all!!! Brittany Rosebrook

Client Served

Rating: 5

CureAhC works tirelessly to help families affected by AHC. Around the clock! My family relies on CureAHC and has benefitted from the research efforts promoted by the organization. Thank you!!!

Kathryn40

Professional with expertise in this field

Rating: 5

This is a group made of primarily of parents whose children have been impacted by this devastating disease. It is extremely rare and much in need of good, consistent research. This organization reaches out to parents and professionals worldwide. Their efforts are non-stop and far-reaching. These children, who suffer from occasional bouts of non-stop seizures, heart problems, balance issues and the ongoing fear of head trauma, desperately need all our support.

Kimberly126

Client Served

Rating: 5

Our son was diagnosed with AHC in August 2015. He was only 9 months old and we had never heard of AHC. We spent 9 hours that day at the doctor and looking back I didn't hear much after the diagnosis. Quickly, we looked for online support and found Jeff with Cure AHC. We realized at that moment we were not alone. We received information we would have not otherwise been privy to. Cure AHC has been available to answer our questions 24/7....and have put us in contact with the doctors and staff at Duke University so our lil one can be evaluated. Cure AHC and the entire AHC community have become our family. We are thankful to all the hard work and dedication they have to all of our families!!!

Bianca7

Client Served

Rating: 5

Cure AHC is great!
When my little nephew got diagnosed with AHC and we didn't really found the information we needed, I contacted Jeff and I got an answer on a lot of questions.
I know, when needed, we can count on Jeff and Cure AHC. An for that, we are really grateful!

Karen297

Client Served

Rating: 5

Our daughter was diagnosed with AHC in the spring. Cureahc and its members have been supporting our family through many things since that very day. They have helped us better understand certain symptoms and problems, helped with ideas of new things to try, connected us with the expert physicians and most importantly, made us feel not so alone. We are thrilled that Ahc is becoming known by more people and are so thankful to cureahc for raising awareness and funds for research.

Donor

Rating: 5

Like many I had never heard of AHC until a friends daughter had this. I made it a point in my life to make sure the word got out so people can know about AHC. I then did a softball tournament for CURE AHC. IT IS NOW MY MISSION. TO GET THE WORD OUT!!! Jeff is a truly amazing person and so are all the families!!!! My team and I all got shirts and we wear them with pride and in the hopes of someone asking us about AHC!!! I will continue to get the word out there and direct people to the website to learn more and donate!!! Love Cure AHC and I will continue to pray and help in anyway possible!!!!

Thais F.

Client Served

Rating: 5

Jeff and AHC helped me understand my daughter condition. This group offer a lot of emotional and profesional support. Brings families that is going thru the same together we can share our experience and questions. They have a great tram working hard to find a cure for AHC. I am glad I found this organization and I would like to thank everyone and specialy Jeff for all their help!

Rhonda D.

Client Served

Rating: 5

Like many people, I had never heard of Alternating Hemiplegia of Childhood before becoming Matthew Wuchich's nurse in 2013. I needed information so that I would know how to provide the best care for Matthew and be a support for his parents. I found the Wuchichs and the CureAHC foundation were both excellent sources of information on this debilitating disease. Honestly, I have never seen such hardworking individuals as Jeff and Renee Wuchich for CureAHC. Their involvement with other families goes far beyond the call as they visit with families at the hospital, host them in their home when they visit the Duke Clinic, and involve themselves in fundraising for research. They are constantly working at raising community and international awareness. Thank you for all you do to help alleviate AHC.

Shirley25

Donor

Rating: 5

I love CureAHC! I had never heard of it or AHC until I was matched up with my AHC Champion thru the irun4 program. My little buddy's mom told me all about AHC and my new buddy and the first thing she told me to do was go check out CureAHC. I'm so glad I did. I've learned so much. Its a great organization and so thankful they are here to help spread the word about AHC and one day hopefully help find a cure. Thanks CureAHC and Jeff for all you do!

Nancy176

General Member of the Public

Rating: 5

Cure AHC has helped our family tremendously! Our 6 year old son has been diagnosed with AHC 3 years ago, and Cure AHC has been a great help and comfort to families. It is reassuring to know what other parents and children are dealing with and the newest research for a cure on this disorder. Parents are able to communicate with others to research what works or doesn't. Triggers or how episodes affect our children . The newest research and duke university group all the work they do for our kids . Awareness and helping families deal with this rare disorder, has been a stepping stone in research and proving the best for our son to make his life the best it can be. It provides an outlet for parents to bounce off ideas and concepts that help with the care of our amazing hero children.