If you have reached this page, it is because you or someone close to you has been touched by my story.  So, what is my story?  Well, I am a 37 year old California woman who was diagnosed last year with SCA1, one of the several dozen forms of ataxia, a genetic neurodegenerative disease.  Ataxia sucks.  I would know because my mom had it, lived with it, and died from it in 2011.  Ataxia slowly rips away functioning from a person as brain cells in the cerebellum die off due to a blip in the person’s DNA sequencing.  In my mom’s case, she experienced changes in her balance and coordination that eventually left her unable to walk or care for herself.  Her speech patterns changed and became slowed and slurred.  Eventually, she could not write and had difficulty eating and swallowing.  Again, ATAXIA SUCKS.

As of now, there is no cure for my form of ataxia.  However, the current state of research into ataxia is encouraging.  I am currently in the middle of a blind drug trial of a drug that received fast track status from the FDA as the first of its class.  The drug was already tested and approved in Europe and has demonstrated ability to slow disease progression, including at least a short term ability to halt progression completely.

Further research is underway to look at possible cures, including rDNA silencing, which would shut off the bad strand of DNA that contains the blip.  I am told by researchers that they expect – EXPECT! – to find a cure in my lifetime.  I have every incentive to make that happen.  I love my life.  I love my husband and my family and all of my friends.  I love being a lawyer.  I love traveling.  I want to do all of these things for many, many more years.

As we were told at the annual NAF conference, money buys research and research buys cures.  It is time we help BUY A CURE.  So, how can you help?

Introducing the first Team Magician  Shiny Fun-Raising Challenge.  The first Team Magician Shiny Fun-Raising Challenge will be a BEER MILE.  You: what in the bejeebers is a beer mile?  Me: well, it is a mile that people (not me) run, while drinking beer (again, not me) at various intervals (the starting point and each 1/4 mile check point until the finish line).  There are a ton of these worldwide and we will be entered as a new, official Beer Mile.

You have two options: 1) Sign up as a participant in the Beer Mile.  The Race will be on July 9, 2017 at 1:00 pm.  The starting point will be at a location in Los Angeles TBD.  Fun costumes are encouraged.  If you are not in LA, but would like to organize a satellite run in another city/state/country, you are encouraged to do so.  All participants are asked to raise at least $100 toward the NAF; 2) Sponsor a participant of the Beer Mile.  You may sponsor a participant by making a donation to NAF (in any amount) and noting your sponsorship (name of participant and amount) in the comments below.  Click here to donate: https://ataxia.donorpages.com/2017150000ReasonsToGive/

PLEASE NOTE YOUR SPONSORSHIP BELOW SO WE CAN KEEP TRACK OF HOW MUCH WE RAISE!  (Or send me an email if you prefer to remain anonymous.)

I will update the totals on the page so that there is an ongoing tally of the participants and the amounts raised for each.

A few things to note: 1) your donation is tax deductible and, because we are running this straight through NAF, there will be NO third party fees deducted from your donation; 2) donations made before the race will be MATCHED (MATCHED!!!!!) by a third party foundation.

So, that’s the scoop.  I encourage you to participate in either manner and to forward this so that others may join in the effort to fund a cure for ataxia.  Thank you for your time.

July 9, 2017 Beer Mile

Participant,       Location,          Total Raised

  • Corby Legault    LA, CA      400.00
  • Dan Tirozzi         LA, CA.     351.50
  • Matt Hirschfeld  LA, CA.    300.00
  • David Basilla      LA, CA.     200.00
  • Patty Walshaw   LA, CA.     200.00
  • Julia Eldridge.    Springfield, VA. 200.00