Navigating the terrain of a new diagnosis or a new development in an existing disease can be overwhelming. When traveling through new territory, it is helpful to have a map or a guide.
In an effort to create such a tool, FARA has outlined some fundamental information about Friedreich's ataxia as well as the drug development and clinical trials process.
To help you chart your own course alongside the latest research findings, there is also information about the FA patient registry and recruitment for active clinical trials.
Along with your "map," it is also good to connect with people who have either traveled the road before you or are traveling it along with you. FARA has also included the profiles for some individuals with FA as well as links to support groups.
+ Educational Resources for the FA Community
Information on COVID-19 and Friedreich's Ataxia
Newly Diagnosed Family Packet
Glossary of terminology & abbreviations associated with FA clinical management and research
Rare Disease Medication FAQs
+ Support Groups & Patient Perspectives
FAPG Support Group
The Friedreich's Ataxia Parents Group (FAPG) is a closed list, limiting subscriptions to parents & guardians of children with Friedreich's Ataxia (or other childhood onset ataxias). From all over the world, parents who are having similar experiences raising children with FA communicate with one another.
Friedreich's Ataxia News by BioNews
The Friedreich's Ataxia News site offers columns written by people living with FA as well as a public forum where patients, family members, caregivers, or medical workers — can share stories and life advice with one another.
Living with FA – videos
+ Athletic Resources
Adaptive Sports
DS/USA offers nationwide sports rehabilitation programs to anyone with a permanent disability. Activities include winter skiing, water sports, summer and winter competitions, fitness and special sports events.
Challenged Athletes Foundation
Established in 1997, the Challenged Athletes Foundation (CAF) is a unique organization that recognizes the athletic greatness inherent in all people with physical challenges and supports their athletic endeavors by providing grants for training, competition and equipment needs.
+ School and Job Resources
Work and school are considered major life activities and critical pieces to a quality, productive life for EVERYONE! People with disabilities are often unemployed
or underemployed due to lack of advocacy or resources.
The Division of Vocational Rehabilitation (DVR) and Division of Blind Services (DBS) are federally mandated programs administered at the state level
for every state in the US and US territories. They provide a vast number of services to maximize independence and assist individuals with obtaining part-time or
full-time employment as well as self-employment options. Individuals must be seeking employment of some kind in order to qualify for services. Examples of services
include home renovations for accessibility, educational scholarships, access to adaptive equipment and technology, as well as job placement assistance. The link
below lists contact information regarding DVR for various states.
https://askearn.org/state-vocational-rehabilitation-agencies/
For students transitioning to college, the Christopher & Dana Reeve Foundation has created informational resources for students who use wheelchairs on campus. Please note: these resources were created from the point-of-view of spinal cord injuries, but the information is applicable to accessibility considerations for people affected with Friedreich's ataxia.
Navigating and Transitioning to College – Brochure provides information on considering physical accessibility, access to care and accommodations in school environments. The way in which these services are administered varies from college to college.
Wheels on Campus – Guide to 20 colleges that create wheelchair-friendly campuses and cultures; includes information on disability-specific scholarships.
Free accessibility consultations for students transitioning to college can be found HERE.
Centers for Independent Living (CIL) are located in every state with the mission of maximizing independent living for individuals with disabilities. They offer 5 core services that include advocacy, information and referral, independent living skills, peer support and mentoring, and transition. This agency offers unique programs for high school students specially to assist them with career exploration. Many locations also offer ramp building services to make homes more accessible for individuals in wheelchairs.
http://www.virtualcil.net/cils/
Each person with a disability is unique in their needs and often it is difficult to know or understand what accommodations are needed and available. The Job Accommodation Network offers information and ideas regarding accommodations in a school setting or at a work site.
https://askjan.org/
+ Print Resources
Shifting into High Gear
By Kyle Bryant
There's Nothing Wrong with Asking for a Little Help ...and other myths
By Dave Lewis, a memoir of his life with Friedreich's Ataxia
Living the Decision: A Pocket Guide to Cramming 72 years of living into 27.
By Phillip Bennett and Jaime Richards
(All proceeds donated to FARA)
+ Travel Resources
Mercy Medical Airlift is a non-profit organization with 25 years of medical air transportation experience. Manages many programs available to patients with both common and rare diseases.
The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities.
Ronald McDonald House Offers low-cost lodging to families booked through a hospital or CARES Foundation (reservations usually need to be made at least 6 months in advance).
+ Home-Based Care Resources
The following website provides information regarding Medicaid Waiver funding related to Home and Community Based Services (HCBS). Not everyone will be eligible but this may be helpful for those individuals who need more intensive home-based care.
https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html
+ Applying for Disability Benefits (U.S.)
The following document provides information about how to qualify for disability benefits with Friedreich’s Ataxia (in the U.S.)
+ Accessibility and Adaptive Products
Reviews of adaptive products
https://dayundefined.com/ is building a unique online marketplace that curates great home good products based on the insights and experiences of people with disabilities. We focus on finding products according to their use, style, value, and most importantly, personal recommendations -- which is why your input is so important! We are planning to launch our product collections by the end of this year, but we need your help. For example, is there a particular product, such as a water bottle, kitchen tool, phone charger, or other household item or home technology product, that you love (whether or not it's considered adaptive) because it makes some aspect of your day easier or more enjoyable? Help us tell others about it by filling out this recommendation form!
Bathroom accessories for people with disabilities
https://www.mrrooter.ca/about/blog/2020/september/helpful-bathroom-accessories-and-remodel-ideas-f/
Device for swallowing pills - The Medi-Straw eliminates the difficulty many people experience swallowing medications and supplements in pill form.
https://medistraw.com/
