10 days until the 3rd annual Hoop, Walk and Roll!! Weather forecast looks great!! Should be lots of fun-we have some great stuff: 4 tickets for Live with Regis and Kelly, Ruth’s Chris gift card, Verve Gift Card, Blue Bottle Gift Card, lots of great sports memorabilia (autographed items Tony Hawk, Paul O’Neil, Derek Jeter, Chris Drury, Maria Sharapova, Roger Federer, Shaun O’Hara), athletic sportswear, Opus One Tour, lots of toys (Webkinz, Knex, Dora, sponge Bob, perfumes, colognes, watches, jewelry, decorations, verizon phone and much more!! We will have complimentary snacks, coffee, water, live music, kids games and temporary tattoos. Hot dogs will be available for $1. Come on out for a day of great fun for a great cause!!
Van Horne Park 10-15-2011 at 10:30
Off of 206 and Benjamin Rd. Behind Burger King and Princeton Fitness and Wellness Center.
We are busy getting ready for the 3rd annual event!! We’ve got great stuff to raffle or silent auction!! We’ve got tickets, restaurant gift cards, cologne, perfume, toys, and lots of really great baskets!! Over 50 raffle items and over 30 silent auction items!!!
ONLY 2 more days to be guaranteed a tshirt with your registration!!
Siara, 4 years old, has a beautiful smile and Type 3 Spinal Muscular Atrophy (SMA). Siara was diagnosed in May of 2007 at 22 months. Her mother began to feel that something wasn’t right when at 15 months she would cruise but never walk across the room. Like most families, SMA is a disease they never knew existed and after much research and work with different doctors, they met Dr. Richard Finkel at the annual 2009 Families of SMA conference. Many of the families involved in our Hoop Walk ‘N Roll travel to the Children’s Hospital of Philadelphia (CHOP) where physicians such as Dr. Finkel help patients with SMA as well as participate in research for a cure.
Siara attended our walk on Saturday, October 9, 2010 with a huge entourage of family and friends all decked out in pink “We Walk for Siara” t-shirts. They were quite a site to see during the walk (watch for upcoming blog posts with a video of our event).
When asked what advice she would give a mother who has a young child diagnosed with SMA, Mrs. Mason responded, “My first advice is to speak to other parents. That was and still is the best information center for me. Also, do not compare your child to another child of their “type” because they are all different. Then take it one day at a time. It’s hard to hear, then understand, then deal with the implications of this disease. It’s a process and it’s different for everyone. The most important thing is your child, and getting her all that she needs to live a happy, healthy and comfortable life. In the end we want that for ALL of our children.”
Last year at the first annual walk, the excitement and suspense was excruciating when the silent auction began! All of the items were phenomenal yet there was one prize, so highly coveted that it drew a small crowd of on lookers as the two couples battled it out to the bitter end. The prize? A private tour and tasting for 6 at Opus One, Napa Valley! Both couples stood by and entered their bids, one after the other until time was called and the bidding sheets were collected. We all stood by with baited breath to wait as the winning bids were announced.
This September, the winning couple, celebrated their 25th anniversary in Napa & Sonoma Counties traveling from vineyard to vineyard tasting, sampling and taking breaks to visit some highly and not so highly acclaimed area restaurants. Mr. and Mrs. M loved their experience and Mrs. M told us, “The tour was fantastic, the grounds were beautiful and the tour guide was gracious and passionate. We learned so much and came home with wonderful memories and a case of wine that we’re looking forward to drinking.” See picture below with link to the Opus site.
We’re sure the memory of that trip will be enhanced as they sample their purchases! Thank you Mr. and Mrs. M for your generous donation and we’re so glad you enjoyed the experience!
Griffen was diagnosed three years ago with Type III Spinal Muscular Atrophy. He’s a bright, athletic and energetic student with an awesome outlook on life. If you ask Griffen, he’ll tell you that he was destined to this disease because he will help to find a cure.
In the short time, that he has come to know SMA first hand, Griffen and his family have organized the Annual Hoop Walk N Roll, he’s endured many visits to Children’s Hospital in Philadelphia (CHOP), and he participates in weekly physical therapy sessions. Recently Griffen competed in a wheelchair & ambulatory sports tournament, and was asked to speak to students at Princeton University. Daniel Notterman, MA MD, of Princeton University asked Griffen to come into his class of Premed students to put a face on Spinal Muscular Atrophy and to give Griff a chance to explain to these future doctors how it affects his life and that of his family.
Griffen would like all that read this or who have the opportunity to hear him speak that a cure is just around the corner and he is working diligently with the help of family and friends to eradicate Spinal Muscular Atrophy. Take a look at the video to hear more from this courageous young man.
The date for our second annual Hoop Walk N Roll is drawing closer! For those of you new to our blog it’s October 9, 2010 at Van Horne Park in Montgomery Twp. NJ. The park is conveniently located off Route 206 just north of Princeton.
As we get closer to the event, we’d like you to meet our kids. We have 6 local families in our area who have been affected by this devastating disease. Most recently, Davy James of the South Brunswick Post sat down with one of the families.
The Fantel Family resides in Kendall Park, NJ and they have two sons; the youngest, Ray, is 23 months old and was diagnosed at the age of 4 months with Type I SMA. Type I is the most severe.
Click on the link below to read the article in the Post and learn more about this family struggling with Spinal Muscular Atrophy.
On 8-6-2009 at the Montgomery Township Meeting a proclamation was approved to declare 9-26-2009 as SMA awareness day. We appreciate the support of Mayor Wilson and all members of the Township Committee.
Montgomery Township Declares September 26 SMA Awareness Day
We will have all kinds of raffle items! Big Apple Circus tickets, Golf foursome from Mattawang, sports tickets, baby basket, pet basket, hair cut gift certificate and more . . .
This is a blog area for the 9/26/2009 Hoop Walk and Roll. All the volunteers are getting excited for this great event. This is a place where we can share current information about the event, answer questions and take suggestions. Please register to comment on any entries in the blog!
