Speech to Speech

Today I represented FARA to the California Community Colleges as they kicked off their Employee Charitable Giving Campaign. I was offered this opportunity by a close family friend, Michelle Ellis. Thanks Michelle!

I gave my presentation and heard from 3 other non-profits who were invited to speak at the meeting. One of the other speakers was Dr. Bob Segalman who is the founder of a service called Speech-to-Speech (STS). STS provides communication assistants (CA's) for people with difficulty being understood by the public on the telephone. Speech-to-Speech is of relevance to the FA community because many FA patients have difficulty communicating on the telephone due to our progressive speech disability. STS is available for business, medical, and personal communication. STS is available in all 50 states, plus the Virgin Islands, Puerto Rico, Australia, New Zealand Sweden. STS is easy to use and available from every phone and does not require registering to use. Just pick up the phone and dial 711 and request a Speech-to-Speech Operator. Your family, friends and business acquaintances can call you and use the STS services just as easily.

I was totally unaware of this service before today and it is a free service that anyone can use anytime we pick up the phone. Dr. Bob said it is Sacramento's best kept secret aside from the amount of money the legislators receive from lobbyists. Here's how it works:
Call 711 and ask for Speech-to-Speech or in California dial 1-800-854-7784. You will reach a communications assistant who has specialized training in listening and is able to understand speakers who have problems speaking loudly or clearly. The trained communication assistant repeats the exact conversation you request to the person you are calling. All conversations are private and confidential, there is no censorship. Callers can use this service as often as they want - 24 hours a day, 7 days a week - conversations have no time limit. Find out more about STS at speechtospeech.org.

After we all gave our presentations, Michelle invited me to lunch with her and Dr. Bob. I found out that there is a lot more to Dr. Bob than just being the founder of a national phone service for disabled people. Dr. Bob is the only person with Cerebral Palsy to hold two PHDs and he wrote a book about his life with a disability. We had a great time at lunch and I am going to start reading Dr Bob's book tonight! Find out more about Dr. Bob Segalman at drbobsautobiography.com.

Me, Dr. Bob, LaCandice (Dr. Bob's CA), Michelle

Brianne's Story

“…the world keeps spinning, life keeps changing, and I’ll enjoy each moment as it comes.”

My outlook on life has changed quite drastically because of Friedreich’s Ataxia. I live life for today; for this very moment. Not for yesterday, that’s done. Not for tomorrow either, that’s not looking too bright. I make an effort to get the most out of each moment.
Let’s backtrack a bit… my kindergarten teacher noticed that I was “different” than the other kids. Different being that I sat down a lot instead of doing the standard kindergarten thing; I didn’t play to exhaustion like all the other kids. I went through elementary school with everyone thinking I had a balance problem, because that is what I understood, and told them. The doctors had no idea why. I was finally diagnosed at about 10, after years of seemingly pointless testing. Now I am in my thirties, and I’m happy to say that I live on my own, I have my own apartment and my own car, just like everyone else. I have also experienced various sports, extreme sports you could say.
I continue to struggle against my FA, and enjoy doing it. Why should I sit back and make it easy for FA to run its course? I take an adaptive PE class twice a week, do hippotherapy (horseback riding) every other week, go swimming once a week (when it’s warm enough) and go to the gym whenever I can. This is my weekly routine.
On the more extreme side of things, I snow ski each winter, I go camping, rafting, and skydiving numerous times in the summer. I’ve been parasailing, and I am going to try paragliding.
I may be stuck in a powerchair, I may require a lift to get around my apartment, I may need a speech amplifier and hearing aids, but the world keeps spinning, life keeps changing, and I’ll enjoy each moment as it comes.

Today is my Birthday (actually it ended about 20 minutes ago). I realize it will not be my birthday by the time you read this but on this occasion I feel like it is appropriate to draw attention to my fundraising page for Ride Ataxia Philadelphia. Here you can make a donation, view my progress toward my fundraising goal and view the overall progress toward the entire event goal. We are off to a strong start but we need your help to get us there. Thank you for your support!

Recovery

Just got back from a ride and I have a million things to do today (don't we all).

Often times when I finish a ride I shower, get dressed, then I'm off doing my million other things. Then a couple hours later I crash (just completely run out of energy). This is because I overlook the recovery part of my workout. I often don't eat enough after a ride to allow my body to recover. Three years into my cycling experience I am finally realizing that I need to slow down and be mindful of the recovery process after my rides.

So this morning I ate right when I got off the trike, I iced my knee, took a rest for a bit, took a shower, got dressed and now I'm off to do a million other things...

Every Day in October

If you haven't noticed, I have been posting every day for the past few days. There is a lot of exciting stuff to communicate lately and I would like to let you know about all of it. For that reason I am going to try to post a blog at least every day for the month of October. I have never tried this before and it is already proving to be a challenging task. However I am going to give it my best. You might get some posts at 1159pm because I had already gone to bed and remembered just before I fell asleep. Also I am going to be traveling to the Philly Ride which will make things challenging but lets see what happens. I hope to see you here every day!

If this post did not satisfy your appetite for entertainment, please check out this post from a couple years ago, its one of my favorites.

Friendly Reminder

About FARA:
Friedreich's Ataxia is a genetic, progressive neuromuscular condition that affects all muscle coordination from the toes to the fingertips. FA has side effects such as scoliosis, diabetes and serious heart complications. The progressive loss of coordination and muscle strength leads to motor incapacitation and the full-time use of a wheelchair. Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s. The Friedreich's Ataxia Research Alliance (FARA) is supporting promising research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms. http://curefa.org.

About Ride Ataxia:
Kyle Bryant founded Ride Ataxia in 2007 with a 2,500 mile ride from San Diego, CA to Memphis, TN. Since then Ride Ataxia has become a national powerhouse travelling 3,300 miles in the past three years, raising invaluable ataxia awareness and bringing together $700,000 in research funds. With Kyle Bryant as the Program Director, Ride Ataxia now operates as a FARA program and in 2010 Ride Ataxia will feature challenging and family friendly rides in Sacramento, CA, San Diego, CA and Philadelphia, PA. The event will expand to Dallas, Tampa, Atlanta, Boston, Chicago, St. Louis, Seattle and beyond in the near future.

The mission of Ride Ataxia is to Educate the public about ataxia by drawing attention through acts of physical endurance, Enable the advancement of ataxia research through collaborative financial support and Empower Ataxians by inspiring, motivating and providing opportunities to develop physical and mental strength. http://rideataxia.org.

Ride Philly Registration

The registration for the Philly Ride is going very well! We already have 125 participants signed up with room for many, many more. So please click the link above or visit this website: rideataxia.org/philly to register online.

For those of you coming from out of town (like me), we have reserved a block of rooms at a pretty good rate in a couple different hotels (click here for hotel information). The room blocks are almost full so call soon!

Registration for the Philly Ride ends October 18 so sign up now and start raising funds! We have reached 20% of our fundraising goal with only a few weeks remaining! I am confident that we will reach our goal! Check our progress or make a donation at the FUNDRAISING PAGE.

PS - Check out this press release about the ride.