The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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Dr. Mandy Harris
​Travel Grant Application

If your family would like to attend the Annual SCN8A Clinician, Researcher, and Family Gathering but need some financial assistance getting there, The Cute Syndrome Foundation (TCSF) would love to help!
Group of people conversing in a circle at the 2023 SCN8A Clinician, Researcher, and Family Gathering.
Hillary Savoie and Kacie Craig welcoming attendees to the 2023 SCN8A Clinician, Researcher, and Family Gathering.
Mother and son smiling at each other during the Clinician, Researcher, and Family Gathering presentations.

TCSF will award a number of travel grants for the SCN8A patient, up to two adult caregivers, and the patient’s sibling(s) to help cover travel expenses incurred to attend this annual event, including: fuel, airline tickets, hotel accommodations, etc. Grant amounts will be awarded based on the number of applicants received and the funds available. 
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Please note, unless extenuating circumstances arise and are requested, stipend reimbursement occurs via PayPal after completion of the event and in certain cases will require the submission of itemized receipts that reflect travel expenses. 

Travel grants available:

Each SCN8A family is eligible for up to 2 grant options.
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1. Hotel Accommodations:
  • Up to 3 nights max in the hotel where the annual gathering is being held*
Please note: Hotel stipends are based on the maximum value of TCSF contracted accommodations at the hotel where the annual gathering is being held. If you choose to stay off-site, only the maximum stipend amount will be reimbursed. *Dollar value of stipend will be provided once the hotel contract is finalized.
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2. Domestic Flight Stipend:
  • Solo Traveler: Up to $500 USD (reimbursed for actual cost)
  • Family: Up to $1,000 USD (reimbursed for actual cost)
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3. International Flight Stipend:
  • Solo Traveler: Up to $750 USD (reimbursed for actual cost)
  • Family: Up to $1,500 USD per family (reimbursed for actual cost)
Please note: Flight stipends are intended to cover the actual costs incurred up to the designated amounts. Ensure that you keep all receipts and documentation for reimbursement purposes where applicable.

4. Ground Travel Stipend*:
*This is a full stipend; all non-flight travelers will receive the stipend amounts stated below. No receipts are needed.
Sliding scale based on miles traveled:
  • 150-300 miles: $250 stipend
  • 301-450 miles: $500 stipend
  • 451+ miles: $750 stipend
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If you require additional funding beyond the maximum stipend provided to attend the annual gathering, you may request additional funds on the travel grant application. 

This grant is open to all SCN8A patients and caregivers worldwide who are members of the TCSF Family Network. If you are not yet a member, please contact Shelley Frappier. Please note that bereaved parents are also encouraged to apply. 

View additional conference assistance opportunities below.

PictureDr. Mandy Harris being presented with a CUTIEs Award by Juliann Bradish in 2016
This grant is in honor of the late Dr. Mandy Harris. Dr. Harris was a Pediatric Neurologist at the Riley Hospital for Children at Indiana University Health and was known throughout the SCN8A community for her endless passion and dedication to not only her patients, but our entire community. Parents often share stories of contacting Dr. Harris at all hours of the day and she would respond within hours with encouraging words and treatment recommendations. She provided hope for our community in our darkest days, and we will continue to honor her by helping families attend the annual gathering to learn more about SCN8A and enjoy time with other SCN8A families.

Application Deadline: September 30, 2024

 

Other Conference Assistance Opportunities

We are aware that the costs to attend TCSF’s Annual SCN8A Clinician, Researcher, and Family Gathering can be prohibitive for some families. Below we have listed some resources that may help with lodging or travel costs. TCSF encourages you to explore these resources prior to applying for TCSF’s Dr Mandy Harris Family Travel Grant. 
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National Agencies
  • The ARC of the United States: Each chapter offers different programs and services so you should check with  your local chapter to see what is available. https://thearc.org/find-a-chapter/
  • The National Association of Councils on Developmental Disabilities (NACCD):  Every state has a DD Council with different programs and services. Some states set aside money for conference attendance and education. You can find your Council on the NACCD website at https://nacdd.org/councils/

National Organizations
  • Angel’s Hands Foundation (AHF): This all-volunteer non-profit organization made up of a growing community of family, friends, volunteers, partners and donors, is dedicated to improving the quality of life for individuals living with rare and undiagnosed medical conditions in Utah. They offer conference scholarships. You can learn more or apply for assistance to attend national rare disease conferences at https://www.angelshands.org/services
  • National Organization of Rare Diseases (NORD): NORD offers a Rare Disease Educational Support Program that reimburses registration costs for rare disease-specific educational offerings such as workshops, nutrition classes, and conferences, as well as limited financial assistance for travel and lodging costs. For more information and to apply visit https://rarediseases.org/patient-assistance-programs/
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Medicaid Waiver Programs
If your child is enrolled in your state’s Home and Community-Based Services program, check with your case manager. Some waivers offer educational assistance for parents to attend conferences, paying the registration fees.

Other Potential Funding Sources 
Funds may be available through your church or synagogue or through local fraternal organizations or clubs such as Kiwanis, Rotary, or Lions Club.
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If you are aware of other funding sources, please contact us at [email protected] so we may add them here.

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Past PCDH19 Efforts

​Privacy Policy

The Cute Syndrome Foundation

PO Box 842 Ozark, MO 65721​
The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
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Our tax identification number is: 46-2699066.

© The Cute Syndrome Foundation, All rights reserved
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  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop