KIF1A.ORG introduces a new program to bring support and comfort to KIF1A superheroes undergoing a medical procedure or recovering from an injury. Read on to learn more about this new resource made possible by a partnership with Ryan’s Case for Smiles and Phillies Charities, Inc.

KIF1A.ORG Community,

Along with the diagnosis of KIF1A Associated Neurological Disorder (KAND) comes a myriad of challenges our warriors must face and overcome every single day. Not only do our KIF1A superheroes attend regularly scheduled, routine examinations with numerous specialists, but they must undergo monitoring of neurological degeneration affecting the function and health of multiple body systems. Many tests, such as EEGs, can last hours or days, whether at a hospital or home, requiring immense distraction and patience.

Sedated MRIs to monitor brain atrophy or treatments such as Botox injections for spasticity can be scary for many of our superheroes and their families. Unexpected visits to the hospital and procedures like casting of a broken bone and emergency dental visits for injuries to teeth are a reality. Our KIF1A superheroes are more susceptible to injuries due to the consequences of having ataxia, seizures and vision problems. They are also more likely to undergo invasive surgeries requiring longer than typical recovery times because of the already existing physical challenges experienced with KAND.

KIF1A life is hard, but friends of KIF1A.ORG are here to help.

Ryan's Case for Smiles logo

Thanks to a very special connection initially fostered by a KIF1A family, KIF1A.ORG has formed meaningful partnership with Ryan’s Case for Smiles, a volunteer organization solely dedicated to helping kids feel better to heal better. They created CopingSpace, an online resource and support site offering coping strategies and tips related to a child’s life-changing illness or injury. KIF1A.ORG recognizes the need for this vital resource and recommends CopingSpace to KIF1A families that are seeking additional support.

Thanks to our friends at Ryan’s Case for Smiles, KIF1A superheroes have extra support and comfort the next time they face a medical procedure or injury. Coping and Family Boxes are now available for our superheroes who have experienced a painful injury, have either an upcoming or unexpected hospital visit, surgery, exam or procedure such as an MRI, casting or an EEG, etc., whether the procedure is in the hospital or at home. This grant-funded opportunity awarded to Ryan’s Case for Smiles through Phillies Charities, Inc. allows for 100 Coping and Family Boxes to be dedicated to our KIF1A.ORG families. The boxes come filled with items to help reduce stress for our superheroes and their families as well as promote family fun with the activities included.

As a global organization, we want KIF1A families across the globe to feel supported every step of the way, so this resource is FREE for all superheroes regardless of where they live! If someone from the KIF1A family community would like to request a Coping and Family box, they can fill out the request form on our new Coping Box page.

Boy with Coping Box and Sample Coping Box

We would like to extend a special thank you to Ryan’s Case for Smiles and Sue Flynn, grandmother of superhero Charlotte, for working with KIF1A.ORG on this project. We would also like to recognize Phillies Charities, Inc. for making this project possible.

Relentlessly,
Charlotte Klinepeter
Administrative Manager
KIF1A.ORG

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