Yes, they were long days, from about 6:30 am to 10:00 pm each day, running crazy and never seeing the light of day.

working very hard

so many great minds!

The FARA team worked very hard getting the best of the best together.  We assembled researchers from all over the USA as well as Italy, Canada, Australia, Spain, London, Israel, Belgium the list goes on!  These people are absolutely AMAZING.  They presented their work and then had great discussion around the room.  They shared ideas, made comments and formed teams.

They are our hope and our heroes.  These people hold the key to the future for my daughters!  So as much as I cringe each year worried about our event, I come home from this productive and promising conference knowing it is the only thing I can really do.

the end of day four....

But knowing that it is money well worth raising!

Aaron Stanford supporting us in California

So it is with hesitation but great excitement that I announce that this years fundraiser will be held on September 11th at the same wonderful place.  The Owenego Inn will be the beautiful back drop for us all coming together with a common goal.  This year I will also dedicate the evening to the team of the movie, The Cake Eaters.  The movie brought such great opportunity to us, it created an awareness for the disease of Friedreich’s ataxia a special thanks to Jayce Bartok, the screenwriter who decided to focus on Friedreich’s ataxia, that was just the beginning.

Jeremy and Mary Stuart supporting our fundraiser

It was also an experience of a lifetime for the girls.  They made wonderful friendships and had so many great opportunities through Mary Stuart Masterson and her husband Jeremy Davidson.

Sam & Alex with Mary Stuart, Jesse and Aaron; true supporters and great friends

They are truly special people. Aaron Stanford has also become a staunch supporter in so many ways.  So with the help of the producer Jesse Scolaro I am getting all kinds of great stuff from the movie and just maybe if we are lucky we may have a few of the cast and crew present.  They are a kind and a really fun group! So fingers crossed we will see some of them.  But with them or not we will go on and have an exciting evening.  I am always so humbled by the outpouring of all our friends, that one night gives me enough strength to last the whole year.  I thank each and every person that supports us in  our endeavor.

Outback Steak House will once again supply us with a wonderful dinner and Craig will be the man of the evening bringing us his humor for the auction.  We are working on some fun surprises and we have great auction items coming in so we hope everyone can make this year.

Our first conference when the diagnosis came, Dr Bronya Keats still sits on the FARA board today!

The biggest part of this journey is to remember that as soon as a diagnosis was given to us I decided to start doing something to help the girls.  I quickly found out that the only thing I could do really is to raise money and try to find a treatment!  I have watched them both grow to become strong and admirable young women against all odds. This gives them hope and the ammunition they need to continue on with positive attitudes.  And I thank you all for helping me give them that hope!

Alex has set up a webpage, please check it out at

http:// www.findacureforfa.org

Hope to see everyone on September 11, 2009 at the Owenego as we move forward to a cure for Friedreich’s

a great team celebrating the end of a very successful scientific meeting!

In Peace and Love

Always

Mary

Susan, Tami, Sam, Alex

Me & The Emmy 

It’s funny how things happen, my friend Susan is a very detail oriented person as well as an incredibly talented and driven woman.  She read my blog and sent me about 10 pages of what I missed telling you in the first post.  Actually just a half of a page but I usually exaggerate, as Alex will tell you.

 We met when she produced a television segment that we were privileged to be part of for Keeping Kids Healthy.  If you have not seen the show you can do so at; keeping kids healthy (link on the right side of my page in blog roll box)  and click on the award winning show on Friedreich’s Ataxia.  Susan and Tami produced the show and did a beautiful job AND they received a New York Emmy for it.  AND as life is so funny,  on top of it all, when she said I have to go back I thought this is amazing!  It reminded me of this weekend when we had a chance to see our dear friend in his new play called BACK BACK BACK. IF you get a chance see the play at the Manhattan Theater Club in New York City.  It is about the steroid scandal in baseball-even if you don’t know a lot about baseball-like me- you will still enjoy it.  The acting is great, the plot interesting and the bits of humor perfect!  Jeremy  is an amazing actor and he and his wife Mary Stuart Masterson have been great friends and solid supporters of FARA.    

So Susan wants me to back up a bit and talk more clearly about what it is I am doing and give a little background so…….On March 16th I am leaving from Portland Oregon and riding a bike to Seattle Washington.  We will do 50 miles a day (I am up to 7 straight miles right now).    First let me say that there is a sponsor me page on the right side of the page in blog roll box… reading it is worth it just to see the photo !  Ride Ataxia is in it’s third year, started by an incredible young man Kyle Bryant.  Kyle has Friedreich’s Ataxia, he was diagnosed later in life and decided while he was still walking he would have to do something to make  a difference and that he has.  His first year he raised $40,000 and covered 2,500 miles, his second ride raised $142,000 and covered 650 miles.   This started a joint effort between The Friedreich’s Ataxia Research Alliance and the National Ataxia Foundation to match the funds Ride Ataxia raised to fund new research.  The Kyle Bryant Translational Research Award was born!   Kyle is driven and kind and oh so funny – almost as funny as Sam!  You can read more about Kyle at ride ataxia (click on the link in blog roll).  The Friedreich’s Ataxia Research Alliance is a wonderful group of people who I am lucky to be a part of since the very beginning! They have done more for awareness and research dollars for the disease of Friedreich’s Ataxia and other neurodegenerative diseases than just about any other organization.

Having said this much (hope it was enough Susan) I do want to give some insight into some of the stuff that is not so obvious (or maybe it is).  I am extremely uncoordinated, very claustrophobic and five months ago weighed in at 145. I never even realized I was gaining that much weight-why didn’t someone tell me!  This was a year of fast and incredible transition for me.  Alex had a serious heart complication, my mom passed away on June 30, although THIS may seem trivial to some-my cat passed away in July,  both girls went off to college in September and a dear friendship ended in October………I stopped saying it could always be worse!  So for me, this ride represents even more about over coming obstacles and moving forward in life with humor, kindness and perseverance.

Although my daughters both live their lives with Friedreich’s Ataxia, they are fighters. There are definitely obstacles for them.   Most do not understand that a big part of living life with a progressive disease is that you don’t have the same liberties and choices that you and I have.  You can’t just get up and go where ever you want when ever you want, you have to rely on others to do a lot for you (this is one of the hardest adjustments they have had to make), and there are many times when they can not access buildings like able bodied people do.  Most of us can not step out of our own shoes to realize how difficult such simple things are because we take so much of it for granted.  Sitting in a wheelchair puts you in a totally different perspective of life! And I mean that both literally and figuratively.  So this challenge for me is about learning what it is like to not have choices.  I am terrible on a bike, remember…..clumsy and claustrophobic.  When you are claustrophobic you have an issue with loss of control-that bike has a mind of it’s own.  The thought of riding in traffic is a genuine fear for me.  And the endurance- YIKES!  But I am committed and I WILL do this…….

  I feel an obligation to overcome some of these transitions of life I have gone through this year……nothing compared to what others with Friedreich’s have to go through every day of their lives.  So this bike ride isn’t just about the money. Yes, we need to continue on with research to beat this disease, that is the priority.  But we also need to realize that all people need to be respected!  We are all different- NOT ONE PERSON IS THE SAME.  So that is a driving force also.  I watch all too often the ignorance and the unkind ways of some as they look at the girls.  They look at the wheelchair and that is all they see as opposed to looking at the person.  So the blog will keep you informed of my progress and hopefully open your eyes to some important ways to be a better person.  I know that I am learning everyday.  I hope to continue to learn and grow and help make the world a kinder place.

With Peace and Love

Always,

Mary