Rally on Rainier- September 2016
My two sons, Ryan and Brayden, were diagnosed in the Summer of 2009 with a rare and fatal genetic disorder called Sanfilippo Syndrome. I was told there was no treatment or cure and we needed to take them home and love them while we can. The average life-span of a child with Sanfilippo Syndrome was only 12-15 years. There was no market for a treatment or cure to be developed because there are so few affected both nationally and world-wide. It is a death sentence for my boys and other children affected by this disease. I can’t even begin to describe how devastating it was to be told your children will die and there is nothing you can do. Go to “My Story” link below for the video and more important info.
- November 16, 2015 7pm
Email Rebecca at firstname.lastname@example.org for more information!
September 15 – 30, 2015
CANS ACROSS AMERICA FOR SANFILIPPO SYNDROME!
If you’d like an easy to do fundraiser to help provide funding for the approved gene therapy drug to be made for our kids who are younger, and also to help families if needed, get to and from the clinic location, this is an easy fundraiser anyone can do! It will cost approx. 250k per child to receive the treatment. That’s a lot of money per child! Drug companies will not fund this until the trials are over for our kids and results are in. So please help us make this happen. Every dollar counts!
All you need is an empty coffee can or similar can that you tape a label around that is 8.5″ x 14″, then talk to a local business you frequent often, your workplace reception desk or cafeteria, school office etc.. the places are only limited by your imagination. Ask the manager or owner to kindly keep an eye on the can and you stop in weekly to pick up the donations.
We are trying this for two weeks, but, if business owners or whoever have no issue with leaving the can for longer that is wonderful. Please combine all funds into one check and send to
Team Sanfilippo Foundation,
PO Box 1152
Ronkonkoma, NY 11779
People can also write a check for the can if they wish to donate larger amounts vs just their change. One business we used a while back actually used the can to trade in their paper dollars to get change for their register at times. So it can help a business as well in the respect for convenience. Here are links to the labels, the black and white one is actually of 3 of the Sanfilippo children back in June, the other pic is a random color of children of playing.
http://teamsanfilippo.org/wp-content/uploads/2015/08/cans-across-bw.pdf. Black and white label
May 8, 2015 Guest Bartending Night @ Kelly’s Logan House 6pm – 9pm
1701 Delaware Ave
Wilmington, DE 19806
Sunday April 12, 2015 – 1st Annual Bike Run
Newport, DE. See flyer below for details or FB @ https://www.facebook.com/events/775569605824106/
Sat Aug 09, 2014 – Mon Sep 22, 2014
16822 Whitewater Falls Ct.Houston, TX 77059
This money will be used to fund medical research, and clinical genetic trials scheduled to start in March 2015.
*Shoes are shipped to under-developed countries, where they are recycle via funds2org.com
To View the event page click here, this is ongoing thru Sept. 22, 2014 and is easy to do.
Sunday August 24, 2014
1141 Division St.
Napa, CA 94559
Phone/fax (707) 258-1426
Come enjoy and relax, if you never experienced this, give it a try! You won’t be disappointed,
July 14, 2014 – Team Nola Charity Gold Tournament
Golfcrest County Club – (281) 485.4323
2509 Country Club Drive, Pearland, Texas 77581
SAVE THE DATE, Registration information to come!
May 31, 2014 – Crawfish Boil for Nola Carter
Firehouse Saloon, 5930 Southwest Freeway, Houston, TX 77057
Nola, one year old, was recently diagnosed with Sanfilippo Syndrome A (MPSIIIA). Nola’s family hopes to see Nola have the opportunity to become the woman she was created to be. They are desperately hoping that they will not lose her to this devastating disorder.
Team Sanfilippo is diligently working to make their hope & the hope of so many other parents of children with Sanfilippo Syndrome a reality. They are so grateful for the work that TSF has accomplished so far & want to do whatever they can to fund the medical research and clinical trials that could possibly treat or cure Sanfilippo Syndrome.
For more information email email@example.com
Thursday May 15th, 2014 – Sanfilippo Awareness Golf Tournament 12 pm noon!! Shotgun!
Back Creek Gold Club, 101 Back Creek Drive, Middletown, Delaware 19709
Back Creek Golf Club has been voted #1 in Delaware and is on Golf Weeks TOP 100 places to play. Come join us to help finish the funding for the clinical trial for our children for the gene therapy that is approved now for our kids!!
Please join Carl’s family as they raise money to advance an upcoming gene therapy clinical trial at Nationwide Children’s Hospital in Columbus, OH that will provide a treatment for all the children affected by this disorder. Both of their boys have Sanfilippo Syndrome and will not live a very long life without this treatment.
Corporate Sponsors :
1. Tournament Sponsorship Opportunities
Title Sponsor: $5,000 . . . . . Name and/or logo in title of the event as well as on the golf shirt giveaway to each golfer and numerous signs throughout the event. Hole Sponsor: $1,000, $500 or $250 . . . . . Sign with name and/or logo on hole sponsored. Signs will be sized large, medium and small depending amount of donation.
Dinner & Awards Ceremony Sponsor: $1,000 . . . . . Name and/or logo on title and sign(s) for the dinner. SOLD!
Golf Cart Sponsor: $750 . . . . . Name and/or logo on all golf carts used by golfers in the event.
Practice Range Sponsor: $500 . . . . . Name and/or logo on sign(s) at practice range.
Putting Green Sponsor: $500 . . . . . Name and/or logo on sign(s) on putting green.
Hole-in-One Contest Sponsor: $500 . . . . . Name and/or logo on sign(s) for contest and at contest hole.
Closest to the Pin Sponsor: $500 . . . . . Name and/or logo on sign(s) for contest and at contest hole. SOLD!
Longest Drive Sponsor: $500 . . . . . Name and/or logo on sign(s) for contest and at contest hole. SOLD!
Putting Contest Sponsor: $500 . . . . . Name and/or logo on sign(s) for contest and at contest hole.
2. Team Sponsorship/Participation
Sign up a team of employees from your company to participate in the Golf Scramble. Your team can pre-register for the event below.
$600.00 . . . for up to 4 participants and your Corp. Name/Logo on a small sign at the event.
3. Donation Food, Beverages or Merchandise for Prizes and/or Silent Auction
Accepting donations of food, beverages, gifts and/or merchandise to be sold at the silent auction or to be raffled off the day of the event.
$1,000.00 worth . . . Corp. Name/Logo on large sign(s) at event.
$500 worth . . . Corp. Name/Logo on medium sign(s) at the event.
$250 or less worth . . . Corp. Name/Logo on small sign(s) at the event.
For more information on Sanfilippo Syndrome:
– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –
Yes, I would love to sign up to sponsor the Sanfilippo Awareness MPS Golf Scramble on May 15, 2014
Company Name: _____________________________________Contact: ____________________________
Address:__________________________________________________________PH # __________________
Hole Sponsorship $1,000 $500 $1 $250 Other $___________
Team Sponsorship $500
Merchandise Donation Item: ________________________ Value $___________
Make Checks Payable to Team Sanfilippo Foundation and mail to: Team Sanfilippo Golf Scramble, 3204 Romilly Road, Wilmington, DE 19810
January 20, 2014 – Villanova Teaming Up to Raise Awareness for Sanfilippo Syndrome at Jan. 20 Men’s Basketball Game
@ Wells Fargo Center
To purchase tickets > http://www.villanova.com/tickets/m-baskbl-tickets.html
Villanova versus Creighton will be “Sanfilippo Syndrome Awareness Night,” with several planned activities aimed at raising awareness for the rare disorder
December 19, 2013 ~ An Evening For Eliza!
22nd Annual DDR CHRISTMAS PARTY!!
The Chase Center on the Riverfront
Not too late to Attend or Donate!
Saturday, October 5, 2013
4th Annual Beat MPS Golf Scramble
Sugarloaf Golf Club, Sugarloaf, PA
To read and or print the father’s letter click here> TS_Corporate_sponsor_letter_and_form_2013
5k Run and Walk
47 Elm Street, Everett, MA
Sunday May 19, 2013
12 noon – 4:00pm
Emily’s 3rd Annual Fundraiser to Benefit Team Sanfilippo
Gatelot Avenue Elementary School
Ronkonkoma~ Long Island, NY
See Flyer for additional fun for kids and adults. (Yard Sale begins at 10am)