2009 Walk

On May 3rd, WE WALKED FOR AVM AWARENESS!!!

The walk was great!!! Albeit a tad cold and a little wet. It was still a wonderful event and I want to thank TAAF (with a special thanks to Angela) and Sports Basement for being so wonderful with putting this all together and giving us an opportunity to raise money and awareness for this rare condition. The AVM Survivors Network team raised over $11,000 for this cause! Go Team!!! Thanks to everyone who donated to my personal fundraising page. My goal was $500 and with your help I ended the effort with $900! Almost twice my original goal. What great people I have in my life!

Our event started on Saturday night with a Meet & Greet at Sports Basement. They were nice enough to let us use the "Big Meeting" room to greet our out of towners and have the opportunity to meet everyone in person. It was so nice to finally "know" these people that I have talked with online for so long. And to see them all talking about their experiences with Brain AVM's, treatment, everything. It was a great feeling to be part of this. At one point I heard one of the ladies say "I can't beleive I'm talking about strokes!" I know that the connections we make with other people who have been through what we have, that understand how we feel, what we thing about, worry about, how we rationalize and change...all of that is so powerful and such a blessing.

The McDermott's showed up a little late (they were flying in from Pennsylvania, so they were excused!) and I got a big hug from Jaclyn. For those of you that don't know, Jaclyn was in for treatment on her Brain AVM last month. At only 12 years old, she has already had one embolization after suffering a bleed, 2 rounds of gamma Knife, and most recently Linac. But she is a beautiful young girl, doing a great job of dealing with this. I had made her a sassy hospital gown for her treatment and she was a total hit at the hospital. It was so nice to see her and the rest of the family. Kim (mom) and Jaclyn even made me my very own AVM Tshirt with my "Alcohol...it's the new glue!" them from my blog. It is very cute and I love it!

We had the room for about 3 hours and it was a great time all around. Just some snacks and drinks, and good company. Thanks again to Sports Basement and to Angela from TAAF for helping us to make this happen.

The next day was a little soggy but we started meeting up with everyone at the 8:00 check in. We all had our blue shirts on for the day, to represent AVM Survivors Network! And it was great because we did stand out from the white shirts that TAAF gave to everyone who attended the event. We got some great pics holding the TAAF sign! We spent the next hour chatting with our group, and others. I met a few other of the TAAF volunteers (it is completely a voluntary organization) met up with the Schaners who had missed the Meet & Greet but who had many relatives and friends there to support little Camellia. We also picked up some beautiful hand knit caps that some local women had made and donated specifically for this event. And it was great because it was a cold and dreary day in SF!

I had a special request just a few days before the walk. Danielle turned 12 on May 3rd, the day we walked. She has an AVM in her jaw, lip, and tongue and her family had been visiting my website and blog for a few months. They signed up over at AVM Survivors Network and really wanted to be part of the walk, but couldn't make it all the way from Minnesota! So Danielle donated some of her own money to my fundraising page, and her mom asked a special favor. She wanted to know if I would wear a picture of Danielle on my Tshirt for the walk, so that she could "be there" with us! Of course I would! It was an honor and I was so glad to help!

We had the choice to walk 1 mile or 5k. Because of the rainy weather (and my hatred of the cold) I wimped out and only did the 1 mile loop. But many of the group were brave and walked to the end and back. Looking back, i should have pushed on, but it doesn't matter. We walked and that was the point!

Back at Sports Basement there were raffles (AK won twice, and Josh won as well!) discount coupons for purchases at the store. There was also cake!!! We hung out there, took more pictures, shopped in the store, and then decided to gather a few of our group and head off to a relaxing lunch and an opportunity to dry out. It was a great time to be able to chat more, and to get to know our new friends Nich from Boston, Matt from the UK, and the McDermotts from Pennsylvania! What a great time we all had!

Ivanna, Doug, Nich, Matt, Kim, Dan, Justin, Jaclyn, Scott, Margie, Greg, Serene, Camellia, Jane, Mary, Greg's nephew & fiance and Margie's friend (sorry I forgot your names,) Jaimee & TJ and ALL of their blue hat supporters, Carolyn & her brother, as well as my family; Taryn, Jason, Jan, Dave, Pam, AK, Billy, Glenda, Trina, Kevin, Summer & Reese... thanks to everyone who came out this weekend to make this event memorable and to support and celebrate our "brainers!" This will be a memorable weekend for me and I have appreciated all of the support and friendship from everyone!

Click HERE for a slideshow of pictures from this weekend. I will be uploading additional pictures as I get them from the other walkers. So check back to see more pics of this wonderful group of people. Also, Scott made a video of the event with quick little interviews of many of our AVMers. You can check it out HERE.

The weekend went by so quickly and I'm sad that it is over! I can't begin to explain how important it has been to make these connections with other AVMers. And I know they all feel the same way. We share a bond from an unfortunate situation, but a special bond just the same. I hope that as this event continues each year, that we will have the opportunity to meet more of my AVM family, to spread awareness, and to help such a wonderful cause!

If you look very closely you can see the Golden Gate was the backdrop for our walk!