Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

Family Support & Resources

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.

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.

FA_babelFAmily
FA_babelFamily is an independent multilingual mailing-list born in order to become a source of information for all people coping with Friedreich's Ataxia in Europe and worldwide. All messages dealing with what is being done in the field of scientific research and fund-raising in order to reach a cure for FA are particularly appreciated.

INTERNAF
INTERNAF is an international e-mail based forum to exchange information and support for those who are diagnosed with ataxia. Open to patients, families and friends.

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.

Newly Diagnosed Family Packet
PDF


Genetic Basis of Friedreich's Ataxia - Explained
PDF


Drug Development & Clinical Trials
PDF

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.

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/

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/
 

Sample Class Presentation - Zac

Sample Class Presentation - Alec

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)

Still Dancing
By Gabrielle Ford
($5 per book donated to FARA)

The FA Project is a non-profit organization founded by individuals who have all first learned of this debilitating disease through close relationships with Richard Currier. Their goal is to provide those living with FA the tools and resources necessary to lead the best life possible.

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 (at least 6 months in advance).

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

SHARE

FacebookTwitterLinkedInYoutube
Event H.jpg
Site Map     Privacy Policy     Service Terms     Log-in     Contact     Charity Navigator