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

By midweek the footings were poured for the addition and there was tons of activity. The girls found their way home twice to revel in the kindness and generosity of everyone in the community.  It is just so overwhelming that getting away wasn’t a bad idea anyway.  You know, timing is everything!

Friday morning we headed out!  Mary, Ally’s friend accompanied us so the four of us headed for the train station.  As luck would have it we bumped into Sarah and Couch Pont at the station so we enjoyed the ride to Philly with them! The trip really was so much more positive than negative.  The usual bumps in the road happened, we never let that get us down.  I guess the only really aggrivating episode was when people outside the Philadelphia train station started yelling and beeping their horns because it took us too long to get the wheelchairs into the taxi’s!  Can you even imagine????  Sad so very sad!  But we overcame that initial shock and just moved along in our journey knowing that it would all be worth it.  And worth it, it was!

We got to the hotel and immediately started seeing our friends and “family”.  It is so empowering to all get together, gather our information and gain the strength we need to carry on in the war against Friedreich’s ataxia.  There were all ages there and the girls really had fun meeting everyone.  We all gathered at a reception on Friday evening and had some cool demonstrations.  We saw ballroom dancing for people in wheelchairs.  It was cool and so great to see the possibilities out there.

Saturday was just as great.  A lot of information packed into one day but people seemed to manage it all.  All the speakers were great but there was one speaker in particular that just was mind boggling!

The speaker was Rick Guidotti from Positive Exposure.

He is a photographer with a conscience !  An artist with a mission and a human being like no other!

For the first time in my life I actually asked someone else why they were so happy.  People ask me that all the time.  Kind of dumb to ask that question right?  I mean can you really be too happy?  I don’t think so.  He was infectious. His energy just attacked you and you immediately sucked it all in.

Rick and Ally- two super human beings

He did a presentation on his work all over the world.  He focused on his work on Albinism, it is truly inspiring.  He strives to show the beauty in difference and the organization is dedicated to teach the world about the spirit of difference.  What a great way to instill the importance of kindness, dignity and respect!  I wonder if he bakes cookies also ? He strives to teach people how to see people first and foremost as human beings.  Hmmmm, he is right up my alley.  Please go to his web page http://www.positiveexposure.org.  You will be glad you did!

Rick photographing Sam

All in all this was a great weekend and has empowered the girls even more.  We are now in our individual spots for the week.  I find comfort in knowing they have both done tons of homework and are ready to start the week with their usual optimism.  I am ready for the week ahead knowing that CHOP and FARA have educated and empowered another group of great people and here at home I am surrounded by our community working like crazy to make our home and our hearts warm.  We so appreciate all of those wonderful friends that we are lucky to have. So I close as usual-counting my blessings!

In Peace and Love

Always

Mary