Blown Away

by Suzy

Okay. I asked a lot of people to sponsor me for the race in Austin in February, and many, many people did. Therefore, I did not want to ask for more so soon. However, I did want to share news about our Pip Squeak event, and the fact that Mielle is doing soooo much better these days. So I sent out this email:

Hey there - Just a quick note to tell you that Mielle continues to do well these days! We are down to very small doses of her two most troublesome drugs, and we continue to taper. She is still on some powerful immunosuppressants and even in the best case scenario, it will be sometime before she is drug-free, but she is not really suffering any side effects right now, and her strength and energy are great. We still have blood draws every couple of months, but we stopped the weekly injections a few months ago. She still sees her specialist in Chicago as well as her great doctor at Lucile Packard Children's Hospital at Stanford, and we are so grateful to be in a better place.

On the flip side, I learned of another recently diagnosed case of JM right here in Alameda. That makes three - for a disease that strikes three kids out of a million. The news hit me like a punch in the stomach. I just got really sad, because I have a sense of what that family must endure... but I tried my best to channel all those feelings into more activism for Cure JM.

So! On May 22 we held the second Pip Squeak A Go Go event (a dance party for all ages!) here in Alameda. We couldn't have gotten it off the ground without the amazing Dorinda and Bernadette - and of course, the Devil-Ettes - and we never would have pulled it off without the help of so many friends that volunteered in every way imaginable! We had rockabilly Quarter Mile Combo and go go dancing upstairs, and Cowboy Jared, shopping, face painting and raffles downstairs. It was a busy weekend with a lot of competing events, but we pulled in a great crowd and raised around $4,000 for Cure JM.


We're quickly following that up with yet another race - the See Jane Run Half Marathon right here in Alameda - coming right up on June 5! This will be my FIFTH half marathon in the 1.5 years that I've been running! To tell you the truth, the training has been kind of tough - I feel more tired this time around - but I'm determined to make a good showing. It's on our home turf, after all!

Last but not least, tomorrow (June 2) is my 40th birthday. I choose to view this as an opportunity for a fresh start - a chance to take what we've begun here and just keep on moving forward. Through my experiences with my children, my life - and I - have changed in ways I never, ever could have imagined. So. New decade, new me. I just want to take the positive and keep on - ahem! - running with it. I'd be tickled to drum up a little more dough for Cure JM for this race, and I just set up a fresh fundraising page: www.firstgiving.com/mamajog If you are in the position to help, it would be the icing on my birthday cake.

I sent it out around midnight and then I went to bed. I thought it would be AWESOME if we rustled up another $500 or so before the race.

Well. When I woke up I was floored to see that something like $1100 had been donated! Wh-aat? I was so excited that I leapt out of bed and went for a final quick training run. I was just riding the wave of love and I know it's cliche to say this, but my heart was bursting. Bursting!! (Plus, I made a new playlist with lots of awesome Queen songs - I have to say, it felt great to run down the street with my bursting heart on my 40th birthday blasting "We are the Champions"!) And it just continued on all day. I had a wonderful birthday and did lots of lovely things, and every now and then I would check my email and be delighted all over again to see another donation. It truly was the icing on my cake!

Now, the race is tomorrow and we are at nearly $2300 (and thanks, Nicole, for putting out the call to your peeps as well, and thanks to Nicole's peeps for answering!) I honestly can't believe it. Once again, I am blown away by the support we get from y'all. I feel like I say this a lot, but I hope that doesn't dilute the impact: Thank You. Thank You. From the bottom of my heart, Thank You.