This is our personal once a year appeal for donations for the AHC foundation Sharon works with. We have lost 5 individuals to AHC complications this year. Just this week a young girl lost her battle with AHC.
Our third annual “RACE to END AHC” is on, culminating on OCT 2nd with a virtual celebration in honor of all of those AHC individuals who are affected by this debilitating disorder. (we will gladly be accepting donations any time after October 2nd as well :) We continue to raise money for research, that will someday put an END to AHC!
Please can you help? Any amount is much appreciated and every dollar donated is a big win for the kids!
“AHC” stands for Alternating Hemiplegia of Childhood even though ironically those affected never grow out of it. These kids never have a chance at a “normal” childhood!
AHC is a Rare neurological disorder characterized by unpredictable occurrences where any or all parts of their bodies becomes paralyzed, lasting for minutes to days to weeks even, and then the paralysis can alternate to the other side. These are AHC episodes.
- Episodes can be triggered by everyday things we all enjoy like bath water or swimming, smells from perfumes, cooking scents, neon lights or sunshine, heat or cold, excitement, exercise, and foods.
- Each episode they have, increases their chance of escalating developmental delay and physical debilitation with life threatening and sometimes permanent damage.
Most AHC individuals also have episodes of dystonia (similar to a painful charley horse) EVERY DAY. Half the kids also experience seizures, sometimes life threatening. Other AHC symptoms include digestive disturbances, heart issues, speech and language delay, imbalance, cognitive dysfunction, compromised fine and gross motor skills and behavior problems characteristic of AHC.
Yet these kids are so lovable and their families are the best! From the moment a person is given a diagnosis of AHC the race is on. Every step taken, every drop of sweat that is shed, fuels cutting edge research, life changing awareness, and relentless advocacy to end the nightmare that is AHC.
We know there are lots of charities out there begging for help but please consider putting the AHC kids on that list. When you donate to the Race to End AHC & AHCF you are contributing to cutting edge GENE THERAPY RESEARCH and so much more. The primary focus of the foundation is to fund research, however, a portion of donations also go toward providing support and resources to families living with an AHC diagnosis.
Thank you from all the AHC “Kids”! Join our Facebook page to learn more stories about the kids and their families https://www.facebook.com/AHCKids and celebrate with us on Oct 2nd!
Checkout our website www.ahckids.org to see how far we’ve come with research and what’s next!
Please join us now as we "Race to End AHC". Help the AHC foundation provide hope for a cure and support until we find one.
Thank You and Best Wishes,
Sharon & Pas Ciccodicola
One Mission – End AHC!
Sharon M. Ciccodicola
AHCF Coordinator
2000 Town Center suite 1900
Southfield, MI 48075
Cell: 313 663 7772
Alternating Hemiplegia of Childhood Foundation
www.ahckids.org
| Supporters | |||
| Name | Date | Amount | Comments |
| Others First | 10/21/2022 | $1,000.00 | Anthony Ciccodicola | 10/21/2022 | $100.00 | Anonymous Friend | 10/17/2022 | $52.34 | Donating in honor of all the amazing work my Aunt does! | Anonymous Friend | 10/03/2022 | $26.06 | Mario and Nancy Liegghio | 10/03/2022 | $103.30 | Richard Taszreak | 10/03/2022 | $103.30 | Purchase Family | 10/02/2022 | $515.24 | Keep up the good Race! | John Smith | 09/24/2022 | $154.79 | Eliza Firestone | 09/20/2022 | $51.80 | For my Uncle Pas and Auntie Sharon! Love, Eliza and Daniel | Anonymous Friend | 09/19/2022 | $103.30 | MariaLuisa Ciccodicola | 09/16/2022 | $206.28 | Dominic & Diana Lemma | 09/15/2022 | $300.00 | Mo Goodrick | 09/15/2022 | $1,000.00 | Wendy & Pat Ciccodicola | 09/13/2022 | $103.30 | Beline Obeid | 09/12/2022 | $52.34 | M Jahn | 09/11/2022 | $26.06 | Sharon Ciccodicola | 09/10/2022 | $103.30 | In honor of all those with AHC and their families who valiantly overcome their struggle everyday! | Nancy Florkowski | 09/10/2022 | $31.20 |
| Total | $4,032.61 | ||