Frequently Asked Questions

Full day events, Workshops are designed to engage families with other families navigating the Duchenne journey and empower them with knowledge. Attendees will receive an immersive educational experience on:

  1. Daily stretching techniques with instruction provided by a CureDuchenne Cares Certified Duchenne Physical Therapist
  2. Standards of Care and Disease Management provided by clinicians actively treating individuals with Duchenne
  3. Research and clinical trial updates, provided by scientists, clinicians, and pharmaceutical patient advocacy representatives
  4. Family & Caregiver resources

The CureDuchenne Travel Assistance Program is offered to individuals with Duchenne, their immediate family, and/or caregiver(s) with significant financial need (based on the FPL standards below).

As a nonprofit organization, CureDuchenne relies on the generosity of donors and sponsors. The continuation of the Travel Assistance Program is dependent on the availability of funds. This program can be modified or discontinued at any time should funding become limited or no longer available.

Travel Assistance Program Eligibility Criteria

  1. For individuals under 18 years of age, a parent or legal guardian must apply on their behalf.
  2. Applicants must be U.S. citizens or permanent residents.
  3. Applicants must have a confirmed Duchenne muscular dystrophy diagnosis or have an immediate family or household member with a confirmed diagnosis.
  4. Applicants must reside greater than 180 miles away from the venue where the event is being offered.
  5. Applicants must demonstrate financial need: household income at or below adjusted 400% U.S. Federal Poverty Level (FPL). CureDuchenne may request financial documents such as recent tax returns, 1099s, Social Security benefit statements or W-2s for review to determine eligibility.

Travel Assistance Program Acceptance

Travel Assistance is based on a first-come, first-serve basis for as long as funding is available and based on the sole discretion of CureDuchenne. Submitting the application does not guarantee acceptance into the program. Your application will be reviewed, and you will be notified of your status within 48 business hours of receipt.

If determined eligible, CureDuchenne will secure hotel accommodations on your behalf.

Travel Assistance Program Acceptance

Travel Assistance is based on a first-come, first-serve basis for as long as funding is available and based on the sole discretion of CureDuchenne. Submitting the application does not guarantee acceptance into the program. Your application will be reviewed, and you will be notified of your status within 48 business hours of receipt.

If determined eligible, CureDuchenne will secure hotel accommodations on your behalf.

2019 Event Eligible Nights
Workshop Friday

 

Cancellations

Should you need to cancel this reservation, you must contact cares@cureduchenne.org no later than 14 business days prior to the event. Neglecting cancellation jeopardizes the potential for other eligible recipients to receive this assistance.

Travel Assistance Program Support

CureDuchenne is a nonprofit organization that relies on the generosity of individual, foundation and corporate contributions to advance its mission. The Travel Assistance Program is supported by pledges, grants and other contributions.

2019 Household Income Requirements for the Travel Assistance Program

Annual household income must be at or below 400% of the U.S. federal poverty level guidelines.

Federal Poverty Level (FPL): an income threshold that varies by family size, which outlines the estimated minimum income required for a household to buy food, clothing, transportation, shelter, and other necessities.

Family Size

(Persons in Family or Household)

48 Contagious States, Puerto Rico and D.C. If you live in Alaska If you live in Hawaii
1 $49,960 $62,400 $57,520
2 $67,640 $84,520 $77,840
3 $85,320 $106,640 $98,160
4 $103,000 $128,760 $118,480
5 $120,680 $150,880 $138,800
6 $138,360 $173,000 $159,120
7 $156,040 $195,120 $179,440
8 $173,520 $217,240 $199,760
For each additional person add $4,320 $5,530 $5,080

SOURCE: Federal Register, January 28, 2019
https://aspe.hhs.gov/poverty-guidelines

*To determine eligibility for assistance via the Travel Assistance Program, please click here to apply. Travel Assistance Application: https://bit.ly/2PwTIJs

Yes, children are welcome at all Workshops. Complimentary on-site childcare (Kid’s Care) is also offered for the length of the Workshop. Children are welcome to accompany you during the workshop, however, please be advised that the contents of the presentations and the subject matter may be inappropriate and/or sensitive in nature for children. It is up to the discretion of you, the parent(s)/guardian(s) to determine the appropriateness for their individual child(ren).

Kid’s Care is available for anyone under 18 years of age. Some of the younger children like to color and play with Legos while older children play card games, watch movies, or use their phone/tablet. There is something for everyone in Kid’s Care!

If your child(ren) needs help using the bathroom, takes medication during the day, has special feeding procedures, etc., the childcare provider(s) will contact the parent(s)/guardian(s) to assist. Access to the Kid’s Care room is available to parent(s)/guardian(s) at any time throughout the day.

Please be advised that the contents of the presentations and the subject matter may be inappropriate and/or sensitive in nature for children. It is up to the discretion of the parent(s)/guardian(s) to determine the appropriateness for their individual child(ren). All featured speakers at the workshops are respected professionals with expertise in the healthcare field. You will receive an agenda during registration with the list of topics to be covered.

Yes. Breakfast, lunch, beverages, and snacks are provided at no charge. Please indicate any dietary restrictions and/or special meal requests on the registration page.

Workshops are scheduled from 8:00AM until 4:30PM with breakfast and registration from 8:00am – 9:00am, a mid-morning 15-minute break, an hour-long lunch and an afternoon 15-minute break.

Please submit any presentation and resource requests to cares@cureduchenne.org after the Workshop.

Sessions are designed to engage, empower, and link families with other families navigating the Duchenne journey. Held in different cities across the country each year, Sessions are informal two-hour conversation style events with a member of the CureDuchenne Cares team and a featured speaker. Attendees will have the opportunity to engage in casual conversations about sometimes hard to discuss topics such as: health and wellness, coping and overall disease management along with time to engage with other local area families who have a loved one with Duchenne muscular dystrophy.

Yes, children are welcome to accompany you, however, on-site childcare is not available. Parents/Caregivers/Grandparents/etc. are encouraged to treat this as a “night out” when possible. Kids’ menus are available should it be more convenient for them to join you at the Session.

Yes, children are welcome to accompany you, however, on-site childcare is not available. Parents/Caregivers/Grandparents/etc. are encouraged to treat this as a “night out” when possible. Kids’ menus are available should it be more convenient for them to join you at the Session.

We always want to hear where we are needed most! Please email requests/suggestions to cares@cureduchenne.org

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