We’re too close to stop here!

We’re too close to stop here!

Last Friday, Caleb and I were on our way to Canton, IL…to Holly’s house. We were a day late for the start of the visit due to severe flooding in that area but we were there in plenty of time for the really big event…the 10th Annual Walk for Fragile X Syndrome and 3rd Annual Fragile X 5K!

Caleb just loves Holly, Holly’s house, Allison, Parker and Daisy…we hear a lot about them from him…the boy does have excellent tastes, just like his mama! He had no idea what was planned for Saturday, and I had no idea how he would handle the crowd and new location. He did so very awesome!

He spent hours and hours in the gym in the bouncy house or playing basketball with whoever he could trick into catching the ball (a little hint, if C ever throws you the ball…please be prepared for a game of catch that will last as long as your shoulder holds out…) There are potentially several Cantonites? Cantonians? who were in shoulder slings the following day. While these good citizens provided free childcare, I was able to walk around and chat with all of the amazing people that had come from near and far to support the fragile X community. The one and only time Caleb needed me, he came out of the gym and found me to get the help he needed (really, he only needed “A dollar? Rootbeer?”) then he went right back to playing.

This event has raised over $30,000. Can you believe that?? THIRTY THOUSAND DOLLARS! Holly was thrilled, everyone was so very excited…but I’m a greedy girl…I asked Holly what her record was and she told me $32,000. Say what? We are NOT going to get that close to the best walk total EVER and just stop.

SOOOOOOO….donations will be accepted through May as they are every year. Don’t you want to be a part of the best walk ever?? Please visit the fundraising page to push us over the top! We need to hit at least $13,000 on this page to push us over…whoever pushes us over $15,000 will get a prize. I’ll have to think about what I’ll do…it might be fragile X related, it might be some autographed Caleb art, hmmm…I might even be able to send you some drunk gummies (except that might be illegal *ahem* so maybe not…)…I’ll take requests/suggestions for a prize. So COME ON!

Join all these amazing people who walked and the equally amazing people who have already donated to make this Holly’s best walk ever!

 Go donate now! Walk for FX

How can you possible say no to this face??

Quick, catch!

Fun and Fundraising!

Fun and Fundraising!

A local business has offered to host a fundraising event for the National Fragile X Foundation! Eric and I will be going (YAY for grown up time!) and we’d LOVE to see some other families and friends there too. 25% of the proceeds will benefit the NFXF!

Boston View @ Kingston Station 6pm-8pm by Allan Dygon

Please join “Painteria” for a fundraising event on Monday, April 29, at the Kingston Station restaurant at 6pm-8pm. You will be provided with a canvas, easel, paint, brushes and aprons. Along with Allan Dygon, who is a local artist, he will guide you step-by-step through the process of creating a beautiful artwork. For more details please check out the website: www.thepainteria.com

Team Fragile X fundraiser – A Contest!

Team Fragile X fundraiser – A Contest!

If you missed my earlier post (Team Fragile X – A Challenge), or that humungous fundraising link to the left, or that pole dancing photo on Facebook, there is a fundraiser going on to benefit the Annual Fund for the National Fragile X Foundation! Just to clear up any possible confusion…I started the fundraiser, because someone had to, but this is a TEAM event. We need as many family members and friends as possible to join the team and help raise money. Any money you raise on your page goes to the team total but YOU get credit for your hard work on your own page. OK? Cool, eh?

SO. We currently have 10 members on the team which is very cool and I LOVE them for joining. I just think we can do better. The more people who join, who spread the word about what this means to their family, the better because, let’s be honest…your Great Aunt Sue doesn’t want to donate money to me…she wants to donate money to you and your adorable kid(s)! Your friends and family are MUCH more likely to donate if they know the person (YOU) asking. That’s why it’s important to join the team. I don’t think I need to tell you why it’s important to donate money, you already know!

Now, about that contest…it’s pretty simple…whichever team member1 who raises the most money between now and 12:00 PM EST on December 7th gets what’s in this box:

Pretty cool, eh? What’s inside is really, really, super cool…

You can’t buy one of these stainless steel, NFXF travel mugs anywhere at the moment! Some day you will but until then the ONLY way to get this…is to win it. So…go join the team and raise some dough!

Instructions on how to join Team Fragile X can be found here: Team Fragile X

  1. Excluding me! []
Team Fragile X – A Challenge

Team Fragile X – A Challenge

It is the time of year for counting our blessings, for taking a look at our lives and giving thanks for all of the amazing things we have in this life both big and small. I’ve been looking hard at my everyday life for the awesomeness I might overlook on a day to day basis and I am loving what I see. A good number of my Facebook friends have been doing the same thing and I’ve enjoyed seeing what they have to share. It occurred to me that one of the things I am most thankful for…are all the people who have come into my life in the last two years.

Two years ago, Eric and I attended our first International Fragile X Conference. We went not expecting to get anything from it and we came back completely transformed. We met the most amazing, motivated, passionate, loving people…people who made us want to be more like them. And with the support of the National Fragile X Foundation, we’re getting there.

The foundation is just kicking off their Annual Fund fundraising project, this is the primary source of funds for all of the foundation’s activities, and it just happens to correspond with both Giving Tuesday (you can read about that here.) and the Firefox challenge on Crowdrise.

 The Challenge begins at 8:00:00 AM Eastern on November 19, 2012, and ends at 11:59:59 PM Eastern on January 10, 2013.

The three (3) fundraisers that raise the greatest, next greatest and third greatest amounts of money on a CrowdRise fundraising page for their benefiting charity during the Challenge Period, and are in compliance with these Terms and Conditions and the CrowdRise T&C, will earn the Challenge Grants.

The First Place Challenge Grant is $50,000, the Second Place Challenge Grant is $30,000 and the Third Place Challenge Grant is $20,000.

There is no way I could win that challenge on my own…but I think we as a community can. After talking with the foundation, I set up Team Fragile X on Crowdrise and now I’m asking YOU to join that team. You can set up your own page and push it out to your friends and families and take an active roll in giving back.

Detailed instructions on how to join Team Fragile X: Team Fragile X

Or if you just want to donate, go right to the Team Fragile X page: Team Fragile X Crowdrise/Firefox Challenge Page.

Let’s go team!

Excitement and disappointment.

In July, in Miami, there is this little shindig planned. I think you may have heard of it, it’s the International Fragile X Conference.

If you are new to the fragile X world, it is pretty much the place to be as a parent of a child with fragile X. It’s five intense days of presentations on just about any aspect of fragile X that you can imagine and it happens every two years. The top researchers are there discussing their work, fragile X experts are there sharing tips and best practices and parents are there sharing…pretty much everything. There is a lot of learning and a lot of fun to be experienced.

If you’ve been newly diagnosed, don’t worry if you’re not ready to go just yet. We skipped the first two after our diagnosis and I nearly had to beat poor Eric to death1 to get him to go in 2010. It is mentally and emotionally exhausting and, yet, oddly rejuvenating. When the time is right for you, you will be amazed by what you can get out of the experience. You will most likely move heaven and earth to be sure to attend every one after that as well.

That said…it’s not cheap. The registration fees are expensive then you have flights and hotels and food…it adds up really, really fast. One of the many terrific things that the National Fragile X Foundation does is offer scholarships to cover the cost of the registration fees to help ease some of the expense. BUT, they can only give back what has been given to them and when they have more need than funds…they have to make really difficult decisions.

The scholarship fund this year received an unprecedented number of requests, the Foundation was forced to close the application period early because they far exceeded the funds available. When you have been in a position for many, many years to say “yes” to everyone who asked, it’s very disappointing to find yourself having to say “no” to so many families. When you, as a family member, need that help in order to attend to learn what you can to help your child, it’s heartbreaking, I’m sure, to be told “no.”

I feel like a dipship for not doing this earlier but I guess I didn’t really understand what this fund meant to people, what the hope of going to the conference gave to people until I saw the reactions. So, I’m on a crusade. The early registration period for the conference ends May 15th and then the costs start to escalate. Between now and then I’m going to ask you all, FX related or not, to donate to the scholarship fund and turn some of those “no”  responses into “yes'” responses. Eric and I, through the LINKS group, are funding two more.

Donate directly to the NFXF (it’s tax deductible!) by going here:

Any amount will help, a lot of small donations will do great things. Please put “Scholarship Fund” in the acknowledgement section to direct your gift.

  1. Lovingly, of course. []