Mary Caruso

Learning to all get along with along with all people  is such a great life lesson.  What better way to learn to get along than to work with a diverse group of people who come from quite an influential background.  I am lucky to say that I am privileged enough to be part of (well kind of part of) a group like this.  I am returning from a tiring two day board meeting in Philadelphia.  Yes, tiring but also invigorating because there was presentation after presentation about promising work being done and then there were hours of grueling “housekeeping” choirs that kept everyone up to date about how amazing the board worked together and how important it is to offer stewardship to others and how beneficial it has been for research, to build credibility and connect scientists, government and the patient community.  I look around and quite honestly feel like I am a cartoon character in a realistic motion picture. There are people around me that have extensive backgrounds in so many different fields.  I really can’t say much except that I am honored and very very grateful that the future of my girls lies in the hands of these amazing people.  
What’s more is that because of these people on the FARA board, the community of patients and their families has in ten years moved from being strangers and a world apart to becoming a close and tight knit family.  In 1995 when Sam was diagnosed I was told among other things that I would probably never meet anyone else with this disease (and that is a quote!) and I left to face this lonely world alone.  But how things can change and how a little faith can keep you afloat.  Today the patient “family” consists of hundreds YES hundreds of people so dedicated and so determined to FIGHT this disease!   What more can you say than the word GRATITUDE to so many people!

There is now so much hope and so many wonderful people doing fundraisers that are making a difference.  We support each other in

enjoying what life has to offer after all isn't that what all this work is for?

many ways, and doing fundraisers has proven to keep us “family” and stay ahead of the disease by forging so much research.

So, I leave exhausted but humbled, weepy but empowered and all because I sat with  a room full of extraordinary people.  I head home looking forward to optimistic days and knowing that I am very grateful that I have the ability to sign up for  Ride Ataxia in Tampa Florida on April 13^th and bring a gang full of my wonderful friends to Ride Ataxia in Philadelphia in October!  We can raise money and awareness and at the same time give Sam and Alex the knowledge that we love them and we are all pushing for a treatment for them and so many others.

I must end by adding a quote from the FARA mission statement…….

Acting along, there is very little any of us can accomplish.  Acting together, there is very little we will NOT accomplish!

Thank you FARA Board, families within the parent group and so many that support us all daily!!!!!

In Peace and Love

Always

Mary

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

loving supportive grandmother

Happy Mother’s Day to all mom’s

always showing her affection

This is the last of the firsts for me.  That may not make sense to some, but to anyone who has had a significant loss will understand that following the loss of that person means facing each first occasion without them.  Subsequent occasions don’t necessarily mean that you bounce back to normal but the firsts are just so empty.  Funny that the last of my firsts without my mom would be Mother’s Day.  I have been dreading this for two weeks now.  I have sat in front of this computer all week ready to write something but have not been able to.  I guess it’s fear, fear of facing the day without her.  People have said to me that I have my children but it is different.  To me Mother’s Day was about honoring my mom!  I never really thought about the mom I am because I always had her, and BELIEVE me she is a mom to be honored.  

mom and dad-soulmates

So this morning I sat again in front of this screen and could not work up the courage to write anything.  What the heck could I be afraid of?  falling apart? breaking down and crying? I know, no matter what I would bounce back. I would bounce back because of what my mom has instilled in me.  That is why I have beena ble to endure all pains and obstacles.  It is the product of two wonderful parents!

I thought I might mention some of the beautiful memories I have of my mom.  One of the most enjoyable things I keep in my heart is just sitting there with her in the morning at a table.  Any table! It wouldn’t matter where.  It could be my house, her house, on vacation………she would sit with her crossword puzzle and her glasses on.  Cup of coffee in front of her, not saying a word.  She really hated to be interrupted in the morning when she was doing her crossword puzzles.  But the energy and the silence was so special.  She was so intent and had such a beautiful way about her.  But after that puzzle was done! Forget it! You could talk to her for hours.  It never mattered what the topic was.  She would listen and then give such kind, wise and insightful advice, she NEVER judged and I mean NEVER! Then the most fun times were each time I had delivered one of the girls (and she did the same for my sisters), my mom would pack up her car and head to my house.  It was so wonderful having her around.  The joke was she would also clean your stove! There was rumor that Micki had just one more kid to have that experience of a shiny stove !  Joking of course!  My love of baking came from my mom, I can’t tell you how many joyful hours were spent baking and cooking with her! Then when my life really got challenging my mom was there every step of the way for me.  She would give me just enough advice so that she kept me going without interfering.  That is a true talent! But she was able to always keep me on the right road….you know the road less traveled!

lunch with some of the PICU team at Yale.

So today, when my eyes opened at 5am.  I initially didn’t want to get out of bed!  But I thought about what I preach and I decided to Take my Lane!  I knew what I had to do to take it.  I had to face the fear and challenge myself.  To get motivated I ran two miles then I did some yoga!  That gave me enough energy to think about the day. Then I decided I would pay tribute to my mom by doing something kind.  I would bring lunch to the mom’s that work in the ICU at Yale.  Alex has spent time there, my mom was a nurse and my cousin Jackie is working there today. So here it is at 9:30 and I am good.  I made some food, I put brownies in the over and yes, I am missing my mom.  And I will cry today, I know it!  I will miss her terribly today because she is just so special to me!

 Please enjoy your day all you mom’s.  And kiss and hug your mom’s today all you people who are lucky enough to have them with you.  If you have lost your mom, spend the day thinking of them and remembering the good times!  Reach within and take on one of the best attributes your mom had and make it part of you! 

In Peace and Love

Always

Mary