About Connor 

Photo of Connor James Smith, aka

​Connor James Smith, Connorman, was a real-life superhero spreading joy and smiles everywhere he went. As one of the original diagnosed SCN8A cases, he faced the toughest battles our children go through, but he overcame them with an immense passion for Christmas lights, music, going to the beach, and hiking and running while in his wheelchair. Connor passed away at age 12 from respiratory failure and seizures, but now his joy for life will live on by supporting the SCN8A community in chasing their dreams for a life well lived and loved! 

About the Grant

Picture
The Connor James Smith Patient Assistance Grant offers financial assistance to patients with a confirmed SCN8A diagnosis for necessary medical equipment, therapy devices, educational aids, burial costs*, etc, that are not covered through private insurance or other assistance programs. *Bereaved parents requesting financial assistance with burial costs are not required to fill out an application, instead please contact Kacie Craig directly.

The Connor James Smith Patient Assistance Grant Program has been established and funded with the support of Shawn and Krista Smith, Connor's parents. TCSF is committed to help sustain Connor’s legacy by double matching funds in 2023 and matching each following year. 
​
This program is open to all patients worldwide who are members of the TCSF Family Network. If you are not yet a member, please contact Shelley Frappier.

Application Information

Application Period
February 9th-December 1st (or once funds are depleted)
The application period closes each year on December 1st or once funds are depleted. Any remaining funds are rolled over to the following year, with the program opening each year on International SCN8A Awareness Day on February 9th. If an application is received outside the open enrollment period, that application will automatically be rolled over to the next enrollment period. Please note that TCSF understands that emergent situations (such as burial costs) might occur outside of the open enrollment period of this program; therefore, please contact Kacie Craig to discuss eligibility. 

Applications will be reviewed and approved on a first-come, first-served basis. An applicant may apply once per grant cycle with a yearly maximum of $5,000 and a life-time award maximum of $10,000 (in extenuating circumstances, higher grant amounts may be awarded, funds permitting). 

Items that would be considered under this grant program:

Little asks can make a big impact! No ask is too small. What is the JOY your affected family member needs in their life?
  • Sensory equipment and toys
    • Examples: bubble maker machine, sensory LED bubble tube, ceiling light show projector, oral sensory motor items such as a z-vibe, trampoline, gym therapy mats, outdoor or indoor swing, play set, zip line for your backyard, ball pit, etc. 

What equipment/supplies or therapy experiences would enhance your affected family member’s life and ease financial burden on their caregivers?
  • Disposable medical equipment not covered by insurance
    • Examples: diapers, wipes, first aid, g-tube supplies, etc.
  • Therapies not covered by insurance
    • Examples: therapeutic horseback riding, hippotherapy, aquatic therapy, etc.
  • Therapy equipment
    • Examples: therapy benches, switches, sensory accessories, etc.
  • Medications and feeding not covered by insurance or high co-pays
    • Examples: Branded Anti-Seizure Medications (AEDs), formulas (i.e. blended foods or special keto formula), special blender to make blended food diets at home, etc.

DREAM BIG! Bigger asks often require major budgeting or multiple funding sources. We want to take the pressure off families and add JOY!
  • Durable medical goods
    • Examples: wheelchairs, special seating, car seats, orthotics, cooling vests, etc.
  • All-terrain accessibility equipment
    • Examples: Wike, special needs jogger, Wonderfold Wagon, etc.
  • Communication devices
    • Examples: iPads, LAMP programs, etc.
    • If you are applying for an iPad, please note this program only covers either an iPad (wifi only) or an iPad mini (wifi only). An iPad Pro model would only be considered with documentation from a speech therapist of why it is needed for communication purposes.
    • If you were granted funding for an iPad previously, there is a 3 year minimum before you may reapply for a new one. This grant does not provide AppleCare insurance, but you may choose to add it later at your own cost. We highly suggest that you research a durable cover to protect the device and add it to your application estimated costs.
  • Life Enrichment Service Animals
    • Example: supplement the purchase of a task-trained service dog. 
    • Please note, all service dogs and their training must be purchased from a non-profit organization that specializes in training and placing quality, task-trained service dogs (i.e. 4 Paws For Ability, Little Angels Service Dogs, etc.)
    • The Connor James Smith Patient Assistance Grant will only provide grants in the amount of $1000, or less, towards the purchase of a service animal. 
  • Costs associated with home or vehicle modifications
    • Examples: accessible bathroom modification, ADA accessible ramp into the home, wheelchair vehicle modification, supplement the purchase of an already modified vehicle (new or used), etc. 

Emergency Medical Needs and Burial Costs
Unfortunately, an SCN8A diagnosis often leads to unexpected situations. In these events, please contact Kacie Craig directly so the requests can be addressed as quickly as possible. 
  • Urgent medical needs of an SCN8A patient
    • Examples: Life saving medication (rescue seizure medications or EpiPen) is prescribed, but a prior authorization is required and is taking too long to process.
  • Burial costs of a deceased SCN8A patient
    • Examples: casket, cremation, urn, burial plot, funeral home charges, etc.

Please note this list is not conclusive to what could be covered by the Connor James Smith Patient Assistance Grant. For questions regarding this grant program or what other items would be considered, email Kacie Craig.

Selection Process and Additional Information

Applications that are incomplete or missing requested additional information will not be placed in queue for review until complete. During the selection process, all applications will be de-identified and blindly reviewed by the grant selection committee. All applicants will receive an email stating approval or denial of their application. Denied applicants wishing to re-apply must provide additional documentation of a change of status in circumstances or that other alternatives have failed. The grant committee has up to 45 days to review your application.

By awarding the grant, The Cute Syndrome Foundation (TCSF) is making no recommendation to the appropriateness or safety of any particular piece of equipment or therapy in treating SCN8A disorders. TCSF and its Board of Directors, selection committee, and co-funders Krista and Shawn Smith are not responsible for the safety and use of awarded equipment or therapies. Applicants are strongly encouraged to consult with their medical professionals and therapists regarding equipment and therapies that would be most beneficial for their situation.
​
TCSF will not divulge application information without written consent from the applicant or their legal guardian. We do ask that award recipients submit a photo showing the child using their equipment or therapy that we may use for the advertising purposes of the grant program. Children will be identified by their first name only.

Connor James Smith Patient Assistance Grant Application

Your application packet should include the following documentation:
  • Completed application.
  • A recent letter (dated within the past 6 months) from the patient’s physician or healthcare professional explaining the medical necessity of your request.
  • A letter of denial from the insurance provider stating that the requested equipment and/or service was denied. If this is not possible to obtain or the patient requires the equipment/service quicker than the steps it would take to get insurance approval, a written explanation is required. Requests not going through insurance require a written explanation on the application.
  • Any other documentation pertaining to the nature of your request. All information is kept confidential.