Mary Caruso

This week  I got home from four very hectic days!  I was a worker bee for FARA’s 2009 Therapeutics’s Conference.

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

One of the things that I admire in both of the girls is the fact that they don’t just sit around.  They put themselves out there all the time.  That isn’t always that easy as you set yourself up for disappointment but to have the determination and the effort to reach for the stars is such a positive thing!  Sam attended a seminar put on by Southern in April.  This very valuable seminar was designed to inform students about how to make themselves more employable.  One of the panelists was an executive from ESPN.  Those of you who know Sam know that she has ALWAYS dreamt of working at ESPN.  She is a sports enthusiast and played many sports before her diagnosis in 1995.  From that one meeting Sam was able to get a business card from this gentleman, Matt and kept in touch.  He guided her and gave her some great advice, all of which she followed through on.  This eventually turned into a telephone interview which turned into a personal interview which turned into a summer apprenticeship!  She is in her glory, living her dream!  She goes to work excited and brings that enthusiasm home at the end of her day.  Another great bit of information about ESPN is that the few people that have been involved in Sam’s working relationship are AMAZING!  ESPN appears to be a company with a heart, a company that works as a team, a company that cares about it’s employees.  Joe and Marc are open minded and compassionate, they get the big picture of life.  They see Sam for what her abilities are and know that getting her the tools she needs to put her on the same playing field as others are obtainable.  HEY YOU GUYS! Thanks for validating all my years of work.  All those years of instilling in the girls that they need to work hard to obtain their goals, to never give up hope!  Sam is hoping that this will eventually turn into her dream of a career at ESPN

Alex has also found a job in her chosen field.  Alex has decided to study palliative care Social Work at Southern.  She loves to work in this field, which is so admirable.  She also worked hard to follow through and get a summer job at Hospice in Branford.  I have accompanied her and can tell you that it takes a very special person to work in this field…….which I can tell you is Alex.  She is kind and insightful, she is full of compassion and has the most wonderful way with people. She has also been persueing her dream this summer at Hospice.

Alex is also working with a wonderful group of people who understand the importance of dignity and respect.  She is learning so much and also getting so much out of this experience.

I am grateful for the chance to see both the girls living their dreams this summer.  I see other kids their ages and they don’t have half the energy or drive that they do.  I hope they know how very proud I am of their accomplishments.  They don’t sit around and contemplate their own lives there is no pity-nor should there be!

Considering this summer was starting off with no one working and both girls thinking it was going to be a long boring summer…………..it has turned out really well!  Life is Good!

In Peace and Love Always

Mary