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

Tom & Amy behind me on the right

Amy  and her husband Tom were very inspirational to me on the bike ride!  She is funny and kind and soooooo intelligent! He is funny and kind and soooooo intelligent!  Hmmmmmmm there is a theme going on there.  Yes that is right!  They are a wonderful couple who are facing Friedreich’s Ataxia together!  They finish each other’s sentences and know when to have fun, they would razz each other with the best of them but you just simply got this strong sense of camaraderie from them, you know when a couple just “gets it”!  They understand what true commitment means.  It’s not HOW much time you spend together it is the fact that whether or not you are together you are always on the same page.  I loved being around them as did everyone else on the ride!  People like that just pull you in with their wisdom and genuine kindness. 

Well, one of the phrases that  Amy and Tom used on more than one occasion was “TAKE THE LANE”.  What that meant on the ride according to Tom was that if you felt any insecurity or unmitigated FEAR out there on the road you were to yell……TAKE THE LANE.  

getting ready to "Take the Lane"

Then everyone around you would take up the whole lane of the road.  This was our “RIGHT” Amy said and that way we would slow the traffic.  NOW mind you, I was always the last person in the pack. So all of a sudden I would visualize the first car would of course run me over before they would realize that there was a whole pack of riders:-)!  But the sacrifice would be worth it for my new found friends!  I never had the misfortune of being run over but taking the lane certainly had a great effect and it worked!

So now I am home and things start to take on new meaning!  Some of the stuff I discovered in that amazing ride now gets turned into my ordinary everyday life struggles.  So, I realize that Take the lane also means that I can yell it out to myself when the going gets rough.  Now some are saying HOLY COW!  She must be muttering that phrase about a million times a day.  BUT I am not!  I am using the phrase very sparingly and of course only when needed!

carrying sam & aly with me always through life! There really is no other way to get by without learning to "Take the lane" in life!

But what I do realize on weeks like this one is that the phrase works so well in everyday life!  You know, we all face everyday life struggles……life, death, arguments with friends, illness, ignorance……the list goes on.  So this week I did it……I yelled to myself to TAKE THE LANE!  What that meant to me was I was going to muster up all my inner strength, I would realize that some things can not be changed and just have to be dealt with! That is the beauty of understanding the true meaning of perseverance.  So what I can not change this week, I will accept and what I accept this week will be because of my ability to “TAKE THE LANE!  So this one’s for everyone out there that has had a bad week, or a terrible week or even a horrendous week!  TAKE THE LANE with me and feel some empowerment.  If you feel like you are a bit afraid or uneasy, know you can pull from your inner strength and TAKE THAT LANE………..face your fears, overcome them and deal with life’s tragedy’s head on! Tom and Amy will be proud.  And so will I

In Peace and Love

Always,

Mary