gaining momentum but learning all the way!

Mary — Thu, 21 Jan 2010 19:46:56 +0000

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

Mary Caruso » foundation

gaining momentum but learning all the way!