November 16, 2015 7pm

Philadelphia, PA.

Email Rebecca at for more information!



September 15 – 30, 2015


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.     Black and white label  Color 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 @














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


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,

Reiki Flyer14


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


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 :

Sponsorship Opportunities

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

Villanova, PA

Press Release >

To purchase tickets  >

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!


The Chase Center on the Riverfront

Wilmington, DE

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

Benefit’s Jared’s Foundation and Team Sanfilippo
September 15, 2013 
Number Pick Up  8:00 A.M.
Race Starts at 10:00 A.M
The Connor family invites you to join them at the starting line for the fourth annual running of Jared’s Run to raise money for their son, Jared and his fight against Sanfilippo Syndrome. Sanfilippo Syndrome is a terminal genetic disorder affecting children. These children are born healthy but over time lose their ability to walk, talk and even eat. Money raised from this event will help the Connor family give their son access to the best vitamin and dietary supports as well as participation in experimental treatments that are not covered by insurance. Additional funds will be donated to Team Sanfilippo to support research into Sanfilippo treatments and eventually a cure.
Team Sanfilippo Foundation is a non profit organization focused on finding a treatment for Sanfilippo Syndrome. It’s mission is to find potential therapies that can be tested clinically in the near future. They are working hard to advance research, education and improve the quality of life for the children affected by this disorder. They are dedicated to bringing a treatment to these suffering children within their lifetime.
Online Registration is $30.00 with no added service fee.
Online registration closes on September 14, 2013.
 Race Day Registraion is $30.00.
Race Day Number Pick-up from 8:00 to 9:30 A.M.
Everett Recreation Center

47 Elm Street, Everett, MA

First 100 registered racers receive a free long sleeve T-shirt!
Walkers are welcome!
Coffee and refreshments for all at the finish line.


May 8, 2013 – Spirit Night to Honor the Memory of Mia Pruett!
Dayton, Ohio!   Come and eat WAFFES!!!
Spirit Night May 8 from 2-9 at the Waffle House on Colonel Glenn Highway in Dayton, OH. Anyone coming to “Eat for Mia Pruett” will have 25% of their proceeds donated to TS. The local media has contacted the waitresses and will be there. Please spread the word!” 
May 11, 2013, – Somerville, MA
Come join the fun for a GREAT cause!!

Emily’s Dance  3rd Annual Fundraiser for TSF!! 

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)

                                                          This event gets great reviews by all who have attended, both adults and children!!