Long Beach NF Endurance Team Kick-Off!

This year has been a bit challenging for the Fabulous Running Mommy. It went by in a blur of tumor growth, radiation, losing friends to the disorder and traveling all over for the best of care while still running and raising my family. I've been blessed with love and support, and somehow feel stronger for persevering through it all. Now with summer heating up my mind is turning toward my favorite weekend of the year... The Long Beach International Marathon on Oct 9th!!

Yes I am still running for a cure, and wont give up until we get it! The Children's Tumor Foundation has been growing, you can read about the specific ways we are accelerating NF Research here: http://www.ctf.org/NF-Resources/accelerating-nf-research-progress-through-strategic-planning.html. You can see that in the DDI program specifically CTF has invested $970k in developing potential drugs to treat NF. Those specific awardees have gone on to secure almost $4.5m in further funding from outside sources!

Reading things like this motivates me to keep running and raising awareness because I feel like I am actually making a difference, and I know that with our continued efforts I will live to one day see a cure for this horrible disorder. I want to be the 80 year old lady crossing a finish line!

My co-captain John and I have already started making plans for this years team, and we have set a goal of raising $10,000! It is a lofty goal that I know we will reach. We're kicking off our efforts with a fundraiser party on July 23rd! Check out the flyer and contact me for tickets, come out and support a good cause while having a fabulous time!

An Amazing Friend & Teammate

Oftentimes when discussing NF I tell people that as challenging as it can be, if it weren't for NF I would have missed out on meeting some of the most awesome people I know. My friend Sarah Johnson is one of them! We met a few years ago when she first started running for the team in Long Beach, and over time she has inspired me with her amazing attitude.

Sarah has NF1, which is different from NF2. She does not have tumors on her hearing nerves like people with NF2, but NF1 can still cause tumors on any nerve ending as well as learning disorders. Having Sarah at our events each year is always uplifting, I have never seen that girl without a smile on her face and her enthusiasm is infectious.

Earlier this year I got a panicked email, Sarah was at work when she passed out cold. After being rushed to the hospital they found a large tumor on her brainstem! This was a complete shock to her, and a serious medical emergency. She was admitted right away and within a week she was having major brain surgery for the first time in her life. As soon as she was able to communicate again she was sending messages through her family to let us all know she did fabulously, thank God.

Now after having major brain surgery you would think Sarah would need months of time to recover before even thinking of running again, but within a month she was jogging and trying to get her strength back! She was actually upset that she wasn't as fast as she had been before surgery and frustrated by the speed of her recovery. I think most people would have gotten in bed and pulled the covers up over their heads, but not Sarah, she just kept pushing and training and recently she announced she will be running with us in Long Beach this year!

I am excited to see my friend, and proud of her for how far she has come in her journey. No matter what her finish time she will win because we all have to run our own race, and Sarah shows me that every day!

Check out Sarah's fundraising page and read her story:

http://www.active.com/donate/nflongbeach2011/SarahLB131

Understanding

I am tired of being quiet.

I am tired of holding my applause.

I am tired of only singing in my head.

I am tired of politely smiling, while people carelessly ignore me.

I am tired of biting my tongue and,

I am tired of stifling my spirit.

I am loud, I am chatty, I am opinionated and I like myself.

Don't shush me, don't give me that look, don't sigh at me and don't condescend me motherf*cker.

***

I used to laugh really loudly and yell across rooms, now people always have to ask me to speak up because my voice has hidden itself away, afraid to be chastised for its' gregariousness.

When I witness an amazing feat my hands reach for each other and pause in mid air as I glance nervously around me to be sure I am not the lone clapper in a sea of assholes.

Jokes fly over my head when explained to my curious eyes only after the laughter has already completely died.

Everybody sings a song I know but cannot voice for fear of those looks, those "empathetic" tight-lipped head-cocked knowing smiles kind of looks.

Nobody's fault, not yours, and not mine.

Not a misunderstanding, not yours and not mine.

I understand perfectly.

***

An Inspirational Teammate

I am so proud of Christy Vazquez! She is our first Long Beach NFE team member to get her fundraising started for 2011. Her long time boyfriend Gabe Rios has NF2, he has lost several family members to the disorder, most recently his sister Jessica who was only 28 years young. Christy's dedication to Gabe and his family is remarkable. Last year she shaved her head in solidarity with Jessica and motivated many of Gabe's family members to come cheer as she ran a full marathon for CTF in Long Beach! This year she is back, and once again running the full marathon with the goal of raising $2610 in support of NF research. She has dedicated this run to Jessica's memory, and I know she will make us all proud.

Christy has another reason to run strong, very recently Gabe proposed to Christy and she accepted! Everyone who knows them said the same thing, "FINALLY!"

You can check out Christy's fundraising page and make a donation here: http://www.active.com/donate/nflongbeach2011/teamrios