March 5, 2017 – Team Sanfilippo has a new shirt!!!! Money goes straight to Team Sanfilippo and then into helping fund treatments for Sanfilippo children of all ages and stages of the illness. Please consider buying a shirt today!! We have 2 studies going on now a clinical trial happening in about 30-45 days and hopefully another trial later this Fall! All funds from this go towards helping with trials and studies.
Raise awareness in the month of February as we make February 28, 2017 – Rare Disease Awareness day. So many way to share about someone you care about that is RARE! http://rarediseaseday.us/wp-content/uploads/2017/01/nord-rddus-2017-final-presentation.pdf
MPS III / Sanfiliippo families, please when you get a chance, log into your patient profile on https://connect.patientcrossroads.org/?org=ConnectMPS and complete the new survey. This is a screen shot of where you need to be to complete the surveys. On the left side column- if you have an orange explanation mark next to the survey, then that’s the one to be completed. Also notice that there is a place for you to upload medical reports. The registry is for all MPS, ML and glycoproteins. However the newest survey that went out is for MPSIII patients. Note all data is de-identified and this new survey was written by BioMarin.
Slowly we watch them lose what once made them https://www.thelionsroaratpsu.org/home/sanfilippo/
The story is one that many parents who have gone before us have done as well, only to see their children pass on because time is critical in funding for treatments that have been on the horizon for a few years now! Carl’s youngest may have qualified just one before, now things are questionable because of delay in the initial trial. His heart is wrenched, as here’s a man who has physically and emotionally done all one can do, not depending on others all the time to raise the money! He was proactive and still is though heart broken . Take time to read the story if you will. The truth is here for most of us. TSF is continually working towards cures and treatments for quality of life, as that is what most us have to live with.. Quality of life!! Please share his story and donate what you can! Be blessed and Thank you!
Sunday October 9, 2016 1pm
Ostego County Fairgrounds, Morris NY
The Sanfilippo Smash is a charity event held in honor of Martin Gulley and Mea Stokelin . Both have Sanfilippo Syndrome, we hope to make this an annual event. We are hoping to not only be able to give a donation to Team Sanfilippo Foundation which will go directly to the research of Sanfilippo Syndrome but, hopefully one day be able to say our son HAD MPS3. There will be 2 raffle cars that are being built and they will go towards helping with some of the medical expenses that are being incurred by both Martin and Mea’s families. Any Donations made can be made to the families directly or to directly thru this website to Team Sanfilippo please, put in the note “Sanfilippo Smash”, Thank you! You can follow Martin at https://www.facebook.com/RidewithMart
Saturday May 28, 2016– Running Santana Running for a Cure, 371 Marathons, 88 Ultra Marathons
Nanny Goat 24 Hour Trail – Riverside, CA USA
In the demonstration that the run rises always the hearts and enlighten us for solidarity, our great friend Raul Santana fine marathon runner and ultra-marathon runner, shall comply with this ultra-marathon tomorrow Saturday 28 may with a special purpose: raise awareness about the Existence of the apocalyptic suffers from a rare disease that my daughter, as well as so many other children in his condition, Sanfilippo Syndrome.
This is a disease that is presented in a statistic of 1:80.000 births and being genetics, begins his evidence generally from the age of 4 years, gradually stealing all his skills, (talking, eating, walking… Breathe), Less his unwavering desire to live.
Raul Santana bet in this ultra marathon not only to meet the highest mileage possible, but to work together to make a cure a reality.
The symbol of the nanny goat immaculate is a reflection of the power of innocence and the love of God that can never leave without protection for these children and their families. Thanks Raul Santana!!!!
Sunday April 3, 2016- 2nd Annual Ride for Sanfilippo!
10 am – 4 pm in Delaware! https://www.facebook.com/events/1761879474089193
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 take approx. 250K per child to receive the drug. That is a lot of money to raise, drug companies are not helping with this funding until after the trials are complete in our children and they see results. So please help, as 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
Gourmet Popcorn Campaign!
August 3 – 23, 2015
Popcorn for Cure! 40% of your purchase of this awesome popcorn goes to Team Sanfilippo towards Gene Therapy and helping families to get thru it!
Check out the awesome selection! Flavors for you, your friends and family as gifts, an office party, baby shower, or any gathering where snacks and food are needed! Bring something unique and tasty!
https://www.supportyours.org/store/teamsanfilippo/sort/all < please copy and paste the link, for reason links are not working today! Thanks so much, every purchase matters!
May 8, 2015 – Guest Bartending Night 6pm -9pm Stay late for live music!!
Kelly’s Logan House
Wilmington, DE 19806
Sunday April 12, 2105- 1st Annual Bike Run!
Newport, Delaware > see flyer for details or FB page https://www.facebook.com/events/775569605824106/
Collect Old Shoes, Fund Gene Therapy!
Sat Aug 09, 2014 – Mon Sep 22, 2014
FUNDRAISING GOAL: 7,500 pairs of shoes = $3,000*
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 see how you can help, click here > http://www.volunteermatch.org/search/opp1749366.jsp this one is easy, anyone can do it!!
Our beloved son Gabo was born on February 14, 2010, the most amazing Valentine’s gift ever, and the answer to our prayers to complete our family. His first year’s development was normal. However, at 16 months, we noticed he had lost the few words he had acquired up to that point and his overall communication skills had declined. Our search for answers started and the first diagnosis we received was Autism.
While doing some research about potential stem cell treatments for Autism, we visited a Geneticist during the summer of 2013. Additional tests were performed on Gabo, including metabolic testing and genetic sequencing, he received the official diagnosis of “Sanfilippo Syndrome Type A”. Read more here… http://www.gofundme.com/GaboMilagro
National Rare Disease Day February 28th!
Jonny -Lee Miler of “Elementary” advocates for Sanfilippo. CBS did an excellent interview.
Bravelets™ bracelets are worn to help you be strong and brave in tough situations.
You can now have $10 of any single purchase of these beautiful pieces of jewelry go to help Sanfilippo
Check out some of the selections, these are just two them pictured here. They make wonderful gifts as well.
Bravelets™ bracelets are worn to help you be strong and brave in tough situations. Therefore, Bravelets™ and triangles are a perfect pair. The triangle is incorporated not only in the Bravelets logo, but also in every item’s single design. Plain and simple, the triangle represents strength, just like Bravelets
Team Sanfilippo is preparing to do a 6 month research study on MMJ for sleep, dystonia and hyperactive behavior. We would like to see if there is any interest in our Sanfilippo community. The criteria is that you have to live in MMJ legal state, not be on MMJ currently, have a MMJ doctor to prescribe and follow patient and have one of the three symptoms. We feel that if we could have a published research specifically on improvements with Sanfilippo then we could get better access to MMJ.
Please post if you are interested and send Kathleen an email email@example.com
We constantly are working on improving quality of life and we believe that MMJ may be able to improve sleep and movement disorders and we hope to be able to prove it through a clinical study.
Ten Sanfilippo Families Needed for Pilot Testing of Genetic Screening Program
We at Team Sanfilippo have partnered with DNAcheckup, a new nonprofit organization, whose goal is to provide genetic data through saliva testing to families of patients diagnosed with recessive genetic disorders. This pilot program is for a limited amount of families and the initial requirement for the ten families is that the patient must have already obtained a genetic screening, so their mutations are known. From the patient’s data, family members (mother, father, siblings, uncles, aunts and cousins) will be tested for just the mutations known in the patient. This data can be used to determine (in coordination with your physician or genetic counselor) the family member’s carrier status for family planning decisions, like the utilization of in vitro fertilization. The pilot program is meant to give DNAcheckup a test run of their processes and to provide potential funders with testimonials and assurance that their services are needed and are working properly. This pilot program will be able to help DNAcheckup refine their processes and feedback from participants is essential. In 2017, DNAcheckup plans to raise funds to provide free testing to many more families of patients with recessive genetic disorders. The costs of the testing (saliva kit, shipping and lab testing) will be free to the pilot program participants. The pilot program is open to US families but in the future DNAcheckup will provide testing globally. To find out more about participating, please contact firstname.lastname@example.org directly and they will call you with additional details and logistics. We are excited to fund the pilot program testing costs for our patient families in partnership with DNAcheckup and look forward to when DNAcheckup can expand this program to ALL of our families. For further information about the pilot program and DNAcheckup go to http://www.dnacheckup.org/wp-content/uploads/2016/08/DNAcheckup.pdf
We are so happy this is finally happening after the research that started out 18 years from one family organization, “Ben’s Dream”. Unfortunately their son never got see the treatment. In Honor of Benjamin Siedman, we pray this therapy works! For the past 10 years Team Sanfilippo and many others have organized to pool our money together for this therapy! Now it is time to continue on for treatments for quality of life for ALL the kids who do not qualify for this trial or treatment! This one thing Team Sanfilippo has always and will always do, is work for treatments for ALL Sanfilippo kids at different stages of the disease, not just a cure the young one! The family foundations who have worked so hard over the many years can be happy for future generations, but as for their own children they will never see the cure and those who are still with us, still continue to decline and all desperately need quality of life treatments. Please continue to fund raise, donate and share with others, as watching the suffering of these children while the doctors having no answer is cruel. We at TSF work to fill that gap!
Biomarin enrolls first patient with Sanfilippo B ….