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 13th 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
Life is like a sunny day at the beach!
How easily we get comfortable with our lives. I don’t know about anyone else but I am always running on high speed, it’s just the way I am. So two weeks ago, AFTER getting over the bike theft and losing my ipod while doing a three mile training walk, I was commissioned by the girls to run out and pick up some food for them. Our good friend Erica was hanging out at the house and they were all suddenly very hungry. I was snacking on the best clementine when I ran out the back door. As my foot hit the ramp all these memories came to me of the previous two years when I slipped on the black ice that always forms on that ramp! But I hardly got to think much longer than a second when BAMMMMMM down like a ton of bricks. For that one split second as I was going down, I thought………..Jeeze I hate to let this clementine go, but how will I land with this clementine in my hand……..and actually I really didn’t have much of a choice to hold onto it as I hit that ramp with a vengeance. After I looked around to be sure no one witnessed such a stupid clumsy act I took a minute and waited for the girls to come to my rescue, then another minute and then….OH what the heck they aren’t coming………..so I gathered myself up and stumbled back in the house to find out why no one came out. The noise was loud and my gasp was louder! As I walked through the door very disheveled the girls all sat there at the computer completely unimpressed. I guess they had faith that I would find my way back in!
Anyway……as always there is a lesson here. Although I spent the weekend icing and with my arm in a big bulky splint I can honestly say it pulled me back into a great realization. A humiliation if you will, for these times are so important to reflect on your life. Even for me, someone who lives with two girls who are constantly challenged with physical limitations! When my arm was in a temporary cast I couldn’t write, eat, grab a glass, cut my food or even blow my nose very easily. I was able to do these things but it was a challenge. I really believe that more of us should experience these temporary bouts of challenge. Not to say everyone should go out there and take a serious fall but maybe if we all tried to at least reflect on what it is like to live outside our perfect worlds once a week it would give us more insight to appreciate what each of us has. And have patience and understanding for those who are not so lucky. I know this experience taught me to appreciate how easily simple tasks are for me.
SUNBURN!
sam's sixth ice cream cone!
one of the more tender moments of the trip!
We are now in sunny Florida! Thanks to some of our loving relatives and great friends we headed down to warm and ice free weather so the girls could move about and enjoy some outdoor freedom. It has been just so great! We have been relaxing and really not doing anything specific. Just enjoying life with good friends and appreciating the fact that we are here. I had hoped to get in some serious bike riding but the old hand isn’t quite up to it yet. That hasn’t kept me off the stationary bike however and I am working my way up to two hours a day on the stationary bike while keeping my balance with a bad bulky hand!
Quick update on the bike theft! The police feel it’s a done deal; we will probably never see that bike again. However, the rescue efforts from so many have been overwhelming and Jack and Laura have forgiven me (not that they were mad to begin with). It is overwhelming to find how many wonderful friends and kind and caring people I have in my life…..I am blessed for sure! I have a bike from Lauren’s son (he’s grown out of it!) and when I get back it will be tuned up and ready for riding. Don’t worry! It is presently inside my house-out of harms way. My kind and generous friend and dedicated scientist Rob has sent me a bike lock which I will use to lock the bike at night to my ankle! Thank you one and all for your kind offerings and constant encouragement which helps me to look at life though my rose colored glasses!
Stay warm and remember kindness keeps your heart open!
With Love and Peace Always
peace out!
Mary
6:35 am on January 23rd, 2010
And once again Mary, you inspire me to continue the work that I do. If not for your perserverence and determination to follow your heart and help in any way possible, I dont think I would feel as strongly as I do. So thank you, again and again and again for making my life so worthwhile…living with a purpose is truly living life to its fullest!
8:33 pm on January 24th, 2010
You are an amazing woman! Every day I think of how incredible you are to be doing this work! And what a community of friends you have built. You give all of us the gift of your friendship…and an example for us to follow.