Q & A

Foundation Fighting Blindness, Gavin's Groupies, VisionWalk, Hands Down Monkey, Gavin R Stevens Foundation. What is what? What do you do? How do you raise money? Do you sleep?

We have been reaching so many people, and I have been getting a lot of questions in regards to the above. Let me try to clarify. I apologize to our new readers, or followers on Facebook and Twitter. I am still in the developing stages of the new website, and currently working on the content. Please bare with me! Once our foundation website is up, I think this will all make more sense. The below are some questions I have been emailed with, or variations of. Please let me know if there is still some details missing - I know we have our hands in everything.

What is your affiliation with Foundation Fighting Blindness? FFB is a non-profit, nationally recognized organization, whose goal is to find a cure/treatment for blindness. I found FFB last year, days after Gavin's diagnosis. Each year they have VisionWalk, which is their signature fundraising event. It takes place in various cities across the country. We were at such desperation and sadness last year, FFB and VisionWalk helped us. We got a team together in 3 months, and raised over $9,000 in 3 months. I was then asked to be the Walk Chair, and on the board for our Orange County Chapter. I was honored, and accepted the position. Since last year, we have raised over $22,000 for the Foundation. FFB is my second family, they are near and dear to my heart.

What is Gavin's Groupies? Gavin's Groupies was our team for VisionWalk in '09. Since then, whenever we enter an event, and need a team name, we are always Gavin's Groupies. It's catchy. We have shirts, wristbands, visors, and the list goes on with Gavin's Groupies. Every "member" of our new foundation (more info below) will be officially considered a Gavin Groupie with membership, (and other goodies). Gavin's Groupies is our team name, but is also the name of all our supporters. :) It kind of stuck, I created a FB and Twitter name for Gavin's Groupies, and the rest is history.

What is the Gavin R Stevens Foundation? Troy and I started a non-profit, 501(c)(3) organization, GRSF. The reason behind this was, I wanted to start something whose focus is on the exact disease Gavin has, Leber's (LCA). I want to raise awareness and increase funding, specifically for this disease, and not just blindness in general. LCA is so rare, approximately 3,000 in the country. Something needs to happen to really vamp up the research and awareness. No one better than people who are emotionally tied to this disease, than those affected. I can't wait around to wait for a cure, or for someone else to take the reigns and make a stink. We will! Thus GRSF was born. It's been a year trying to put this together, lots of money, research, blood, sweat and tears. Ok, not that drastic, but you get the idea. It's been a long time coming.

Why the GRSF when you have FFB? I chose to form GRSF, only because FFB donates towards many diseases, as far as research. I adore what FFB does, they cover it all. They have made great strides in supporting research for LCA as well, and I am so fortunate for that! Don't worry, we are not cutting off our support of FFB. We will always do VisionWalk, we will always fundraise for them. You can't abandon the support that has brought you to the place where you are. My hopes is we can cross promote, and I already have plans for next year, using GRSF to help FFB with VisionWalk. Stay tuned!

Why the Mud Run? Recently we did the Irvine Lake Mud Run in Orange, CA. This is our second one, and if you combine runners from both events, we had a combined team of 520 people! Mind you, these are all people who ran in the mud, to help us raise awareness! None of the money from the registration was donated towards GRSF. We kind of fell into this, and turned into a great thing. We were featured in an article on msnbc.com, OC Weekly and a few magazines, and other newspapers. We have booths setup with Gavin's Groupies merchandise, literature, and endless volunteers, ready to answer your questions about Gavin, LCA, our foundation, and how to get involved. There are over 5,000 people there each day, so we reach a lot of people! This is why we did it again. It's not just about raising money, it's about educating. :) This is a great place to be able to do it. We actually held our own fundraiser within our team, and our runners were able to take part in our pledge program. We raised close to $2,000 with this, just from others pledges.

Are you doing another Night without Light? Yes! Do I have dates yet? No. I'm sorry I don't have a definite answer on this. We want to wait until the cooler months of the year, and have been talking about this fall/winter. We have other potential events in the upcoming months, so once we solidified those, we will be closer to an answer. I will definitely keep you posted.

I see Hands Down Monkey, what is that? Hands Down Monkey is our first website we started. It is kind of our first go to website that will contain all of our info, and links to my blog, FB and so on. We do a newsletter that is sent from HDM. Anytime we share info, we say "check out handsdownmonkey.com for more info". It's easy to say, and catchy. :)

Will your upcoming fundraising events benefit GRSF? Yes. We have already been receiving checks (thank you so much) to our new PO Box (so exciting) made out to GRSF. Aside from that, our fundraisers will benefit GRSF. I hope to raise $1 million dollars very soon, but will first shoot for $100,000. We will be there soon.. sooner than I think we know.

Where will you donate money from GRSF? We are working on that. We have a general idea of where we want our money to go (towards research), but specifically we need to find where. It may be one specific place, or a few. We are talking to people about this, and communicating with where the money would best benefit. I will keep you posted. I am so excited to be able to cut a check, very very soon! Side note: All our Board of Directors are volunteer, we do not have salary employees. We are not benefiting from any of the money raised, we don't want to.

Why do you do this? Because I love it. It is a mission. I am a walking fundraiser. I had no idea this would be my path. I was very career driven, climb that corporate ladder, make more money, blah blah blah. Then I had kids. Then I had a child with special needs, and a disease I cannot help by kissing his beautiful eyes. We are starting the foundation with no money going into it, our own personal money to start it, and I couldn't be happier. I have never been more fulfilled, doing something I love, living it, breathing it, sleeping it. This is truly my passion, and I make no money doing it. I make connections, we will change lives... and Gavin is part of a bigger picture, and I am so happy to pave that path. It's challenging, it can be exhausting, but I have never been a part of something more rewarding. Doing something for others is where I belong.

Do you sleep? Ha Ha. Only because my body forces me to. Can you imagine what we could do if we didn't spend time sleeping? Grrr...

I guess on that note, since my kids will have me up in 5 hours, I should actually try to get some sleep. I hope I covered it all. If not, PLEASE leave me a question in the comments and I will add it to this post. I love the questions, so nothing is off limits. I know we are doing things all over the place, but thank you for your involvement, and continued support.

I can't wait what tomorrow will bring!

xoxo