Name: Robert W. Gates (Wes)

Age: 31

Where do you call home? Choctaw, OK

Education: degree Bachelor of Art in Multi-Disciplinary Studies from the University of Oklahoma

Tell us about your family: I live with my parents and have never been married.

How long have you known you are living with FA? I was diagnosed at age 13 by Walter Reed Army Hospital in Washington DC when we lived there.

Are there any others with FA in your family? No

This month's topic is, "The importance of FA friendships." It will be led by RJ and Allie. Come hang out!

When: Join us the April 23rd or the 24th at 8-9:30 PM. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30 pm EST each of the two days.

How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date and time you want. Lately, all our hangouts have been filling up. If you signed up and can't make it, please let us know so we can give the slot to someone else.

My journey with Friedreich's Ataxia started 20 years ago. It was 1997 when my sister was diagnosed with FA, there was little information available and no hope for a treatment or cure. After much research, I knew I also had symptoms of FA but waited until 2008 (age 28) to get the DNA test done. After waiting 3 months the results were positive. Some of my first symptoms in high school were bad coordination, weak ankles, and foot pain. At age 32 scoliosis appeared and I began relying on handrails on stairways. My late on-set and slow progression have led to using a rollator and holding onto someone's arm to get around at age 36.

Name: Marianne Hakim

Age: 32

Where do you call home? Beirut, Lebanon

Education: B.A in advertising & marketing and Masters in media studies- My thesis which is the backbone of Friedreich Ataxia Lebanese Association (FALA) — an NGO I established — gave me the opportunity to meet and connect with people, who are affected, like me, by FA in my country. The main objectives are to spread awareness about the benefits of the therapies available to medical experts as well, connect people with FA to doctors and therapists and offer them support, orientation, and care, last but not least encourage inclusion in public places, educational institutions, and workplace.