Parents united to find a cure

Starting fundraisers and activities again now that CoVid restrictions are winding down

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During the past 15 months we have chosen to respect the hardships of many families and communties during the CoVid 19 lockdowns and many who didn’t have a steady source of income. Our clinical trial of trehalose was delayed and hopefully will be back on track soon as hospitals are fully opened up and IRB’s are being approved etc. Meanwhile we have another trail coming up to fund as well. So let the fundraisers and activities begin.

TSF will have another announcement coming soon that families may be excitied about ! Meanwhile there are two fundraisers scheduled next month. Washington State for the bikers and friends of bikers and KY for the Sales of all things good, check the events page for details ! We have two more large fundraisers in the fall scheduled, a golf tournamnet and the Demolition Derby. Details to be posted on these soon. https://teamsanfilippo.org/events-2/events

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Follow us daily on FB as well: http://www.facebook.com/teamsanfilippo

#Giving Tuesday is a day we look to the community for help in raising funds to provide support for our community with Sanfilippo Syndrome of all types. With CoVID restrictions across the world our in person family and organization fundraisers have not really happened. We truly missed our biggest fundraiser in October with Spinning Wheels https://spinningwheelsproductions.com/ demolition derby! Its always a fun event, brings in people from all over the country! Hopefully this giving Tuesday will help to make up some that loss!

Together we can still provide the trials, the research and therapeutic help to our families as needed ! Thank you so much for supporting our mission, without you, we couldn’t do it!

 

 UPDATE AUGUST 22, 2019 – FDA acceptance of IND application for SL-005 for Sanfilippo syndrome. https://markets.businessinsider.com/news/stocks/seelos-therapeutics-announces-fda-acceptance-of-ind-application-for-sls-005-for-mucopolysaccharidosis-type-iii-sanfilippo-syndrome-1028466541  

July15, 2019 – Team Sanfilippo (TSF Inc. ) and Seelos Therapeutics are finalizing the last few things so that the trial can begin! We are very excited to get this started to say the least. This is the first trial that was/is open all types of Sanfilippo, so far only Types A and B have contacted us for enrollment.  This is the first trial that has shown to be safe and have efficiency in similar diseases in humans already! This is the first trial designed and funded by a single patient organization with the support of a therapeutic company!  We are proud to be partners with Seelos Therapeutics.  

Once the trial begins, within approx. 3 months of  that time, we are expecting to open up for expanded use to other families of all types of Sanfilippo who are interested in this treatment as funding allows.  Here’s where we need your help!  We want to treat to more kids, the ONLY way to do that beyond the kids that will actually be in the trial, will be thru more funding. Each additional child that is not enrolled in the trial, but requesting to be added in expanded use treatment will cost approx. 30K per child.  We at TSF has started an expanded use fund account designated towards this only.  We are inviting families to do fundraisers for this purpose. Families interested in expanded use need to contact Kathleen Buckly, President @TSF, via email titled Trehalose Expanded use ASAP @ kbuckley12866@gmail.com   We will than be sure that the doc or PI you are working with gets the info needed and is referred to the proper channels at Seelos.  When there is enough funding raised, your child will be able to participate once approved by your PI and the funds are available.  The waiting list has started,  fundraising is starting.  So get started today!  Here is clip about our partnership with Seelos!  A very unique and strong relationship!  

Families interested in fundraising, can contact any of our executive board at the emails below.  If you wish to make a donation directly, you can at do that our donate links here on our website or via paper mail and designate it “Expanded Use”.  Kathleen @ kbuckley12866@gmail.com Patty @wordinedge@aol.com or Danielle @ lieuslady@yahoo.com

 

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October 2018–  Team Sanfilippo hosted a Family fun Fest in October in conjunction with a Spartan Race that our President and friends were participating in along with the Founding CEO of Abeona Therapeutics and 3 others of their staff ! We had a wonderful turnout of families that came to Mahwah , NJ. They came as far away as Washington State with many from the mid-atlantic region, Maryland and PA and NY, and NJ.  We had activities for the kids, characters who came in, face painting, balloon animals, photo booth action. Excellent dinner and then breakfast the following morning as well. Spinning Wheels Productions presented a nice check of just over 50k to TSF from their annual Demolition Derby just weeks before. The movie “Weight of Mountain” was shown after dinner. Lots of door prizes were given out as well. The 2 days ended too soon! We could have stayed

a week just socializing with like families in such a relaxing atmosphere.   

 

 

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 On March 24, 2018, a team of 8 climbers brought together by a common cause, to raise awareness and funding to stop Sanfilippo Syndrome, will begin a 6-day climb in an attempt to summit Pico de Orizaba, a stratovolcano in Mexico standing at 18,491 feet. The awesome part of this is not just the raising awareness and funds for trials for these kids, but the DAD’s that are training and sacrificing their time for ALL Sanfilippo kids .  Read more here and take a minute or two to watch the video!   Please share the link with your friends and help us to meet our goal. We have a trial for both Type A and Type B waiting to go start soon. Type A is funded by TSF and several other foundations, we are short on funding for type B and another trial as well. Please help in whatever way you can! It takes a village to produce these trials for rare kids! 

https://www.gofundme.com/summittothesun2018  

Also check out the WONDERFUL EVENT on March 12, in Delaware featuring FABULOUS FOOD from DELAWARE TOP CHEFS and the debut of “The Weight of a Mountain”, a documentary about Sanfilippo Syndrome.  /community-news/1244

 

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Happy New Year to all of you!  For some of you it’s the start of a new year but for us it’s a continuation of providing hope for Sanfilippo families all over the world. Because of your generous support, we’ve been able to move closer to doing that! We are very grateful for every dollar donated and event you have done and still do to support the efforts of our foundation. As I said at the FDA meeting last year while getting Armagen’s ERT phase 1/2 trial approved, “there is no HOPE for these kids until there is an approved treatment available to the masses. The only guarantee we know is that early death is a given.”  Right now gene therapy trials are only typically beneficial to the very young who have not shown much regression yet. Where does that leave every child diagnosed over age 5 years on average?  It leaves them with little of nothing right now. Some families have 2 or 3 children with Sanfilippo and have to live thru the regression and death not just once, but 2 or 3 times. It’s a sad reality but does happen.  The ERT will be a hope for all ages. There is another trial that was ready to start even with the clinic set up when it was unexpectedly delayed last year, it will hopefully come to fruition this year. If it works well across the board, it will also would benefit all ages! We aim to continue working on everything possible to provide quality of life for those who have passed the timeline for a possible cure, while at the same time always searching for the magic treatment that will heal each child. 

As this new year of 2018 rolls in, we truly hope that you will stand by our efforts and continue to support the efforts of our amazing Team. You won’t always see us at social events as much as we would like to be there, as the dollars are better spent on research. We do conference calls with our researchers and biotechs on a regular basis and have face to face meetings with them also when they are in the region. While we would love to be the social butterflies, it truly isn’t always cost effective to be at every event or conference. (believe me we all love our days away from Sanfilippo routine ) I hope you understand our stance on those decisions. 

So for 2018, we’re looking forward at seeing the expansion of Abeona Gene therapy that is now funded, we should be seeing at least 15 more kids treated, the signing of the contract with Armagen in the next week or two, then the start of making the drug for ERT from Armagen with trials to hopefully begin by early 2019. Then another small trial for 5-7 patients that was delayed last year will hopefully start as well. We will announce the details when it happens. Many blessings to all of you that have read this far, and we’re praying for more kids to be treated and less suffering for our families.  Here’s to a prosperous and healthy New Year!  

In the spirit of love and compassion for all the kids, 

Patty Taormino

Vice President

 

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Update : Dec 11, 2017 – Thank to all who were voting in the Giving Tuesday Campaign, we are in the finals to possibly win 10K for the Giving Tuesday!  Lord knows we can use it, as we are looking at about 2 million more to complete funding of Armagen’s trial for type B. Keep the prayers going , as now it’s up to the judges opinions of who gets the funds.  Love you all and we do this for each and every Sanfilippo child and family!  Holiday Blessings to each one of you!! https://www.givingtuesday.org/2017-mygivingstory-finalists

 

Update Nov. 26, 2017 –  We now have another contract ready to finalize in the coming days with Armagen and their unique and promising ERT, and possibly a 3rd trial in the Spring we initiated a year ago, but it got delayed last minute due to issues beyond our control. NOW IS THE TIME TO MAKE YOUR DONATIONS COUNT!  GIVE LIFE TO MANY MORE CHILDREN!  GIVE ON GIVING TUESDAY to double your donation. Have a Blessed Holiday season this year and help spread a Christmas miracle to many families in waiting!! 

We at TSF Inc, would like to thank 8 other foundations across the globe that have come together with us to expand gene therapy trials with Abeona to more children both types A and B. This was a huge collaboration that took weeks to pull together and in the end we came up with a very good expansion and funding by 9 organizations including the National MPS Society. This is the kind of work it takes to make things happen. We hope to announcing another trial very soon as well that we will be critical in pulling together with a few other foundations also!  Keep your donations coming in and the fundraisers going, we will be putting your dollars to work for the kids!! We still have millions to fund!  Thank you to all who helped in every way!! 

http://www.nasdaq.com/press-release/abeona-announces-1385m-grant-from-leading-sanfilippo-syndrome-foundations-for-clinical-development-20171016-00578 

 

http://phcorporate-ir.net/phoenix.zhtml?c=63510&p=irol-newsArticle&ID=2308767oenix. 

 

 

 

 

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U.S. Food and Drug Administration main campus building. September 11, 2014. Photo: ALM.

Team Sanfilippo is proud to announce that we have partnered with the biotech firm ArmaGen to bring the latest most promising form of ERT to the Sanfilippo community! This ERT is proving to cross the blood brain barrier in humans. We are looking at trials for both types A and B. 

We had a very good meeting with the FDA on Wednesday May 24 with true expectancy to move this trial forward in our children as soon as drug can be produced. It appears it will take more than 12 months to get the drug made to the patient. We have a 4 .6   million dollar goal in fundraising to support this trial in order to enroll as many children as we can into the initial trial. ArmaGen is currently using this carrier / binder that crosses the BBB with the ERT in 2 other Lysosomal disease. Here is the latest video on the one with MPS I describing Hurler Syndrome and the effects AGT 181 < (the ERT with the binder that crosses the BBB )   https://vimeo.com/217080163?ref=em-share-v

This is an opportunity to fundraise for a treatment that will be of benefit to all ages of Sanfilippo that have not gone into hospice or currently receiving gene therapy. Please consider doing a fundraiser or making monthly recurrent donations to help us to enroll as many of our kids / young adults into this initial clinical trial. I can honestly say.. THERE IS HOPE.. HOPE IS NO LONGER JUST A DREAM!

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Update on clinical research:  Team Sanfilippo is committed to bringing treatments to the patient. We’ve been funding mouse and animal research for over 10 years now and were a major contributor to getting Gene Therapy to the patient. We were the entity that brought Tim Miller, now ABEONA into play here in USA just for the gene therapy trials.  We also have been critical in  helping two of the major drug companies to establish protocols for ERT for our kids. In that 10 years very little is still available to 95% of the children. We are dedicated to getting these treatments TO OUR CHILDREN DIRECTLY!!  They have suffered long enough!

We at Team Sanfilippo have initiated one trial that will be starting very soon. In about 30 days. It is an IV trehalose trial DIRECTLY to  6 children that are moderately affected by Sanfilippo. We are using both type A and B children and have selected families that we know will follow thru with weekly transfusions for this trial. Trial protocol is set up, clinic and doctor are both ready, and as soon as drug production is complete, trial will begin. If this trial proves as successful as we think it will, the trial will open to more children after 6 months.

This trial will cost approx. 60k-70k per child, so we are counting on your donations and fund raising to help pay for these trials.

At the end of May 2017 we will hopefully have the go ahead to start organizing another trial, AGAIN  DIRECTLY TO THE CHILDREN. This trial is proven to cross the BBB. This trial would hopefully begin by the end of 2017 or first quarter of 2018.  Again we are looking at type B and possibly A side by side with it. We will share more on  this after the end of May. Again major funding and donations will be needed, as this trial will be more expensive than the one listed above. Also again we will be treating children and young adults with moderate regression. Not necessarily the newly dx’d . We want to see what the results are ASAP, not years down the road. Treating only the very young just delays the time frame of getting drug to all the kids when we have to wait years to see if there are changes. It also is not a true predictor, as every kid regresses differently and when treating the very young, we have no idea if that child would have regressed at 2-4 years or 8-12 years as some have. So again, many years would go by treating the very young unaffected kids to see if a treatment works. Meanwhile 100’s of children continue to die. It is time to get treatments to ALL our kids ASAP!

Our goal is to STOP Sanfilippo in his tracks and or CURE the disease. We have many things proven to slow the progression that are not being used by many, we want to focus on the fact that slowing the disease gives your children a better chance at being selected for a trial for a cure when they become available. It is very important to prevent and slow damage in the children for the best quality of life. This is what we do best while pushing research to prevent and repair damage in every cell of this disease.

We have been providing product for studies to families such as genistein, CBD oil, sleep monitors,, DNA check ups to see who in the family are carriers. This year it will be doing even more with the two upcoming trials. 

Please consider donations, fundraisers, honorariums and partnerships in providing help for all of these children. Thank you for sharing and helping in anyway possible. No amount is too small, it all adds up at the end result. 

Again fundraising is all the time, not just on MPS AWARENESS DAY! Thank you and may God Bless all our children!

 

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Saturday April 1, 2017 =  Life’s a Beach Lukie’s Bowling Bash!

Rev’s Bowl,  Bar and Grill

25 N. Washburn St., Oshkosh, WI

Registration 11am – Bowling 11:30 – 2pm

This a beach theme, so please wear your beach wear!  Individual and Team Awards for best beach wear! Lot of raffle prozes and face painting too!   https://www.facebook.com/LukiesLegacy/?fref=ts  Stop by Luke’s website to view the raffle prizes and other great info!

 


 

 

 

 

 

 

 

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Saturday, March 18, 2017 – Colin’s Crew

@Ten Pin Alley
6285 Nesbitt Rd, Fitchburg, WI
(Southwest side of Madison) – This event is great for the whole family. Bowling, Pizza, Raffles nd drawings. Come to bowl, or just come and eat and cheer on your family or friends!

RSVP: Download a Registration Form by 03/03/17 on the event’s

Facebook page: >Colin’s Crew: Bowling For A Cure
(Registration at the bowling alley on the day of the event is possible, if space is
available, but pre-registration will be helpful for planning.)
Contact: Facebook Page: Colin’s Crew: Bowling for a Cure-2017
or e-mail: cureforcolin@gmail.com

2017 03 18 Flier MPS Bowling for a Cure Event  

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Research Projects – United States

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May 2016 – A prospective one-year natural history study of mucopolysaccharidosis
types IIIA and IIIB: Implications for clinical trial design ~

Here is the abstract of the study. Several of us parent foundations funded this study for the gene therapy so we could have a natural history to share with possible trial start ups that we chose to do. In the past each drug company was doing their own Natural History Study and not willing to share the information. Rarely were any the children going thru these studies chosen for a treatment. Now we own rights to the study to use at anytime.  If you wish to view the full article you can contact one of us via email and we will gladly send you the pdf.

http://www.mgmjournal.com/article/S1096-7192(16)30184-6/fulltext

 

 

 

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11471 Euclid Ave, Ste 211
Cleveland OH 44106

 

Abeona Therapeutics, Inc. is developing gene therapy based potential cures for the deadly childhood diseases Sanfilippo (SF) Syndrome Type A and Type B.  In SF disease, the predominant symptoms occur due to improper cell function within the central nervous system (CNS), which result in cognitive decline, motor dysfunction, and eventual death. Our two lead products, ABX-A and ABX-B, uniquely deliver the therapeutic product to the CNS with the aim of reversing the effects of the genetic errors that cause the disease. ABX-A and ABX-B induce cells in the CNS and digestive tract to produce the missing enzymes and help repair damage caused to the cells.

Safety studies conducted in large animal models have demonstrated that delivery of ABX-A and ABX-B are well tolerated with minimal side effects. Importantly, efficacy studies in animals with Sanfilippo syndrome have demonstrated unprecedented therapeutic benefit months after treatment. A single dose of ABX-A or ABX-B significantly restored normal cell and organ function and increased the lifespan of animals with SF over 100% a year after treatment compared to untreated control animals. Similarly, animals treated with ABX-A and ABX-B demonstrated significant corrections of cognitive defects that remained months after drug administration. These results are consistent with studies from several laboratories suggesting ABX-A and ABX-B treatment could potentially benefit patients with for Sanfilippo Syndrome Type A and B, respectively.

Abeona, in partnership with Nationwide Children’s Hospital (Columbus, OH), has met with the FDA and is planning to initiate clinical studies of ABX-A and ABX-B in patients with Sanfilippo Syndrome Type A and B set to begin in 2014.

 

 

Substrate Optimization Therapy Sanfilippo A,B,C and MPSI and II
Zacharon Pharmaceuticals
Dr. Brett Crawford
Dr. Lluïsa Vilageliu lvilageliu@ub.edu

Gene Therapy Type A
University of Barcelona
Robin M Jackman RMJackman@zacharon.com

Zacharon is developing a novel small molecule therapy which selectively modulates the biosynthesis of the GAGs which accumulate in patients with MPS I, II, and III A,B and C. Due to this selective modification, the deficient enzyme is no longer required for GAG degradation thus reducing lysosomal accumulation. Zacharon has completed important preclinical development activities including the demonstration of proof of concept using MPS animal models including reduction in GAG accumulation in the brain. In March of 2011, Zacharon formed a partnership with Pfizer Inc.’s Orphan and Genetic Disease Unit to complete preclinical development and successfully advance this program through clinical trials and subsequent commercialization. The successful completion of these activities is designed to enable the first small molecule therapy capable of addressing neurological decline and other needs of patients with MPS I, II, and III A,B and C.

Lysosomal Enhancement Therapy Sanfilippo A,B,C,D and many lysosomal diseases
Texas Children’s Hospital
Marco Sardiello sardiell@bcm.edu

This project is based on our recent discovery of a gene network that controls cellular clearance by regulating lysosomal biogenesis and function (Sardiello et al. Science 2009). Lysosomes are ubiquitous intracellular organelles dedicated to the degradation and recycling of the byproducts of cellular metabolism. We have discovered that human cells have a genetic program that controls the activity of lysosomes through the modulation of master gene TFEB, which encodes a transcription factor that directly binds to promoters of lysosomal genes and coordinately activates their transcription. By acting on TFEB, we can induce the cell to make more lysosomes, hence increasing its degradation capacity.

Sanfilippo syndrome and other neurodegenerative diseases are caused by the intracellular accumulation of undegraded, toxic molecules. We postulate that the increase of cellular degradation capacity as a result of the activation of lysosomal master gene TFEB will result in the clearing of toxic molecules. Preliminary data obtained in cells from other neurodegenerative diseases (Batten disease, Huntington’s disease) showed that the enhancement of lysosomal function via TFEB over expression results in the efficient clearance of the toxic molecules that accumulate in these diseases (lipofuscins and mutated huntingtin, respectively). Moreover, cell lines stably over expressing TFEB showed enhanced ability to degrade glycosaminoglycans (Sardiello et al. 2009), the substrate that accumulates in Sanfilippo syndrome. Therefore, this clearing effect appears to be independent from the biochemical nature of accumulated substances and from the specific site of their accumulation (lysosome for glycosaminoglycans and lipofuscins, cytoplasmic for expanded hungtintin protein). This is likely due to the fact that the lysosome is implicated in autophagy, which clears portions of the cytoplasm, and TFEB is also able to promote autophagy by activating the transcription of several autophagy genes.

Dr. Sardiello discovered an already FDA approved molecule that is shown to activate TFEB. Currently this molecule is being tested on Batten mice. A colony of Sanfilippo mice are being prepared for testing this compound. Mouse study will take approximately six months to complete.

Dr. Sardiello will be screening all FDA compounds with high throughput drug screening to find compounds that can reduce toxic accumulations in Sanfilippo Syndrome.

Gene Therapy Sanfilippo B
Nationwide Children’s Hospital, Columbus, Ohio
Dr. Haiyan Fu

Dr. Fu has developed an efficient gene therapy procedure to treat MPSIIIB. We have made an AAV9 vector that has the ability to cross the blood-brain-barrier. This AAV9 vector carries the gene for NAGLU, the enzyme missing in MPSIIIB patients. By a singly intravenous injection of this AAV9-NAGLU vector, we were able to restore the NAGLU enzyme activity and correct the lysosomal storage pathology throughout the brain, spinal cord and multiple somatic tissues in adult MPSIIIB mice. Most importantly, the AAV9-vector-treated mice showed significant behavioral improvement and survived to a normal lifespan. In addition, this approach is minimally invasive and the IV injection itself has minimal risk to patients. With the generous support from the Sanfilippo families and friends through Ben’s Dream – The Sanfilippo Research Foundation, the experiments of this project are still ongoing.

We believe that we are in a very good position to move our AAV9-gene-therapy approach to clinical trial. We have established a strong team with the goal of obtaining the approval from the FDA for a Phase I/II clinical trial in patients with MPS IIIB. Led by Dr. Kevin Flanigan, MD and professor of neurology, we have submitted a Pre-pre-IND package to the FDA and have a pre-pre-IND meeting scheduled with the FDA. This Pre-pre-IND interaction is for us to get advices from the FDA on specific requirements for the Pre-IND toxicology/safety testing of our approach in animals. This Pre-IND toxicology testing is absolutely required for obtaining the FDA approval for our planned MPS IIIB gene therapy clinical trial.

Additional plans and efforts have been made to prepare for moving this MPS IIIB gene therapy to a clinical trial. 1) We have submitted a translational grant application to the NIH. 2) We are planning to establish a MPS III patient registry. 3) Establish and validate the stable high yield vector producing cell line. 4) Produce clinical grade AAV9 vectors needed for the planned clinical trial, and this is required by the FDA when submitting the IND (Investigational New Drug) application. 5). Testing our AAV9-NAGLU vector in large animals considering the clinical relevance to humans.

A recent Team Sanfilippo – Pepsi grant will add support to our work involved in establishing a high yield AAV9-hNAGLU vector production system.

Gene Therapy Sanfilippo A
University of North Carolina
Dr. Doug McCarty

Because all four forms of MPS III share similar disease properties, we believe that the gene therapy approach similar to that we developed for MPS IIIB may also be feasible for other forms of MPS involving a secreted enzyme. We have therefore expanded our gene therapy program to develop efficient AAV9 vector for the treatment of MPS IIIA. This project is led by Dr. Doug McCarty and has been supported by a research grant from the Sanfilippo Children’s Research Foundation (Canada) and Team Sanfilippo Foundation.

To date, we have made multiple AAV vectors carrying the gene for human SGSH, the enzyme missing in patients with MPS IIIA. We tested these vectors in human MPS IIIA cell cultures. The preliminary data showed that these AAV-SGSH-treated MPS IIIA cells produced and secreted SGSH enzyme. In addition, we treated the MPS IIIB cells with the secreted SGSH and saw significant reduction of GAG in these cells.

We are also in the process to establish the MPS IIIA mouse colony (with the help from Dr. Steve Walkley). The MPS IIIB mice will be used to test the AAV9-SGSH vectors and select the optimal vector for potential future clinical application in MPS IIIA patients. The goal of this project is to develop a systemic AAV9-SGSH gene therapy approach for the treatment of MPS IIIA in patients.

The very recent Team Sanfilippo – Pepsi grant will support us to construct/test the AAV9-SGSH vectors, to develop high yield AAV9-SGSH vector producing plasmid, and to initiate the development of vector producing cell line inconsideration of potential clinical application.

ERT Sanfilippo B
Synageva

Synageva research laboratory in Lexington, MA, has protein engineering capabilities and expertise in the rapid production of recombinant proteins for biological characterization. These capabilities allow us to engineer and manufacture proteins that are either identical to the defective protein or incorporate unique modifications to enhance the biological activity and/or therapeutic usefulness of the defective protein
Program SB-103 rhNAGLU

http://www.synageva.com/programs-pipeline.htm

Cans Across America For Sanfilippo Syndrome!

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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

http://teamsanfilippo.org/wp-content/uploads/2015/08/cans-across-color.pdf Color label

1st Annual Bike Run

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Sunday April 12, 2015 – 1st Annual Bike Run
Newport, DE. See flyer below for details or FB @ https://www.facebook.com/events/775569605824106/

10462549_889769437712553_3639545371422843557_n

Crawfish Boil for Nola Carter

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May 31, 2014 – Crawfish Boil for Nola Carter

Firehouse Saloon, 5930 Southwest Freeway, Houston, TX 77057

http://firehousesaloon.com

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 cdstlaurent@yahoo.com