Parents united to find a cure
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Merchandise updates to support Sanfilippo Awareness!

June 9, 2021 by PattyT

TSF has ongoing campaigns with tee shirts and sweat shirts for Sanfilippo families supporting Sanfilippo and personalized awareness, as well as ribbons and bows, soldier garden flags, angel garden flags, wine glasses, mugs totes etc. Our merchandise is updated on our Facebook merchandise page and ever changing, Please stop by and browse the latest inventory by clicking here > https://www.facebook.com/Team-Sanfilippo-Merchandise-105193968042648 Families who are interested in creating a shirt for their child, please contact Danielle at lieuslady@yahoo.com she will help you in designing a shirt for your child !

Please email Danielle at lieuslady@yahoo.com for questions any of the merchandise

A Very Merry Christmas / Winter holiday, Supporting TSF INC!

We’re offering these bags for a short time (Nov 6, 2020) so you can get them before the holiday ! Click here to view and order !

https://www.customink.com/fundraising/team-sanfilippo-christmas-2020-tote?utm_source=facebook&utm_campaign=desktop-campaign-page-share&utm_medium=social&ref=facebook_social_desktop-campaign-page-share&utm_content=team-sanfilippo-christmas-2020-tote&fbclid=IwAR1St9mhPuOMY4-hg6z64nHKVe-M53NopRIS0tn8dhy7d3ngytNLHMmoZf8

November 11, 2019 – Faces of Sanfilippo 2020 Calendar 

This year we decided to make a calendar featuring Sanfilippo children and adults from all around the world. We are pleased to say the project is complete.  You can view a preview of the calendar at the link below and order one of two sizes and it will ship directly to you. The company does international shipping as well. We’d like to Thank the following sponsors for working with us to make this project possible. There are 7 pages not viewable in the previews online, but there are sponsor pages and more pics of the beautiful children.   

Abeona Therapeutics, DNA Check – Up, Isabelle Juardo Foundation, Lysosomal and Rare Disease Research Treatment Center, National MPS Society, Peer to Peer, Prevention Genetics, Sanfilippo Hope Initiative, Seelos Therapeutics, and Spinning Wheels Productions!!  

 

https://www.createphotocalendars.com/Shop/tsfincteamsanfilippofoundation

 

 

 

 

 

 

 

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Saturday October 5th, 2019 – Sanfilippo Smash IV (Demolition Derby) 

Ostego County Fairgrounds, Morris, NY

In honor of Martin Gulley and memory of Mea Stoecklin.  This year will feature 400 + cars as the event grows and grows! 

https://www.thedailystar.com/news/local_news/derby-driver-g-mu-team-up-vs-childhood-disease/article_58994302-5977-5aef-8e9e-f3e2b4b341dd.html   Check out the local press this year!  Hope you are able to attend !

 

 

 

 

 

 

 

 

 

 

 

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Gene Therapy

Abeona Therapeutics
Clinical programs in MPS IIIA are partially supported by a $4,000,000 grant from Team Sanfilippo. Read the press release. https://investors.abeonatherapeutics.com/press-releases/detail/102/abeona-announces-13-85m-grant-from-leading-sanfilippo

Abeona is enrolling patients in two ongoing clinical trials studying one-time gene therapies for MPS IIIA and MPS IIIB, and planning a third study for MPS IIIA. The first of the three is known as The Transpher A Study. It is enrolling eligible children 6 months – 2 years of age or children 2+ years with a cognitive development quotient 60. The company is seeking to enroll younger, higher-functioning patients into the study.

The Transpher A Study https://www.mpstransphera.com/index.html  uses a single intravenous infusion of an adeno-associated virus serotype 9 (AAV9)-based vector to deliver gene therapy ABO-102 for correction of enzymatic defect in MPS IIIA. Study data for a total of 14 treated patients with MPS IIIA followed for 2+ years (mean follow up of 19 months) showed rapid and sustained reduction of heparan sulfate (the enzyme substrate) levels in the cerebrospinal fluid, plasma and urine and reduction of liver volume to near normal size. There have been no treatment-related serious adverse events reported to date, and investigators have observed encouraging neurocognitive signals in younger, higher functioning patients enrolled in the higher dose of Cohort 3.

The best way to determine if your child may be eligible for one of these studies is to take a 6-question survey at AbeonaTrials.com. https://www.mpstransphera.com/index.html#s3  If the survey indicates your child may be eligible to enroll, you have the option of having the information sent to the nearest study site for evaluation by a study investigator. If you agree to share the survey results, the study site will then contact you for more information. Survey results can also be downloaded to share with your child’s physician. Abeona does not have access to any patient information that is shared in this process. If your child is enrolled in the study, reasonable costs of travel and meals needed by you and your child will be reimbursed, and there is no cost to you or your family to participate in the study. If you think your child may be eligible or if you have questions about the study, email patients@abeonatherapeutics.com. You can also consult this FAQ https://www.mpstransphera.com/faq.htmlor visit Clinicaltrials.gov.  https://clinicaltrials.gov/ct2/show/NCT02716246?term=abeona&rank=2

Similarly, the Transpher B Study uses a single intravenous infusion of an AAV9-based vector to deliver gene therapy ABO-101 for correction of enzymatic defect in MPS IIIB. Dosing of the first cohort of the study was recently completed based on a favorable product safety profile and clear evidence of biological activity observed to date. The first patient in the second cohort has been treated and the study continues to enroll eligible subjects. Read the press release https://investors.abeonatherapeutics.com/press-releases/detail/155/abeona-therapeutics-treats-first-patient-in-second-cohort and visit Clinicaltrials.gov https://clinicaltrials.gov/ct2/show/NCT03315182?term=abeona&rank=1 for more details.

The third study, known as ABT-003, will enroll children who are not eligible for the Transpher A Study. It is expected to begin in the fall of 2019 and will take place at study sites in the US and Europe. Additional details about the study, including enrollment criteria and site locations will be made available when the first site is initiated. If you think your child may be eligible or if you have questions about the study, email patients@abeonatherapeutics.com

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October 6, 2018 – Sanfilippo Smash III –  Ostego County Fairgrounds , 469 Mill Street in Morris, NY   

Vehicle inspections start at 7am, the event begins at noon and could last till midnight! Lots of fun, 

prizes, giveaways, kid friendly!! only $10 admission fee, free to enter a car! Check out the video/ news clip!  https://wbng.com/around-the-tiers/2018/10/01/spinning-wheels-productions-holding-sanfilippo-smash-iii/

 

 

 

 

 

 

 

 

 

56 names of sanfilippo on this car this year!! 

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March 12, 2018 – Chefs Unite to Save Mickey and Cure Sanfilippo

Deerfield @ 507 Thompson Station Rd. Newark, DE 19711

Please join us for a night of delicious food, fantastic wine, and great company for a great cause! We will be supporting the Team Sanfilippo Foundation’s efforts to find a cure for all of the children afflicted with Sanfilippo Syndrome, also known as MPS-III, a rare and fatal genetic disorder. Mickey Merrill was diagnosed with the disease, often referred to as Childhood Alzheimer’s, just last summer.
In addition to a very special meal from some of the Delaware Valley’s best chefs, we will feature the first ever-public screening of “The Weight of a Mountain”, a short documentary about Sanfilippo Syndrome. Produced by Dan Salvo of DP Studios, the film features Carl Kapes, a fellow Delaware father whose children Ryan and Brayden also suffer from Sanfilippo Sydrome. Please view the film’s trailer below.

For ticket info and menu and trailer of documentary click here >  https://savemickey.ticketspice.com/savemickey

 

 

 

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UPDATE : 12/11/ 17 Newark Delaware Chef raises awareness for Sanfilippo and his daughter Michaela, aka”Mickey” 

What an awesome response to Merrill family for support for Mickey!  I encourage you read this article about the 2 events that her family had to help further treatments and a REAL HOPE for Mickey and others! 

http://www.delawareonline.com/story/entertainment/2017/12/08/after-terminal-diagnosis-delaware-musicians-chefs-rally-behind-newark-girl/922525001/    

Thank you to all who supported these events!!  

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Dec 4, 2017 check out the link here and the article below.

The menu looks fabulous!! Don’t miss out! 

https://savemickey.ticketspice.com/chefs-unite-to-save-mickey-and-cure-sanfilippo-syndrome

 

 

 

 

 

 

 

 

http://www.newarkpostonline.com/news/article_0cd63828-c2bb-11e7-b9cb-ebc7b6c2c53d.html

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Saturday August 12, 2017 – Bowling, Raffles, Auctions, Baked goods, door prizes and fun !!!

Come to Michigan for a good time!   Event being held at Mayville Lanes, 429 E. Main Street, Mayville, MI 48744

call 989-843-6971 

 

 

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.

TSF Booster   

 

 

 

 

 

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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 

 

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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.

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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!

Ryan Kapes, 11, left, with his dad Carl and brother Brayden, 8, watch The Backyardigans at their home in Wilmington, Delaware. Ryan has Sanfilippo Syndrome, a genetic disease that attacks the central nervous system. Most children with the condition die before the age of 20.
Ryan Kapes, 11, left, with his dad Carl and brother Brayden, 8, watch The Backyardigans at their home in Wilmington, Delaware.
Ryan has Sanfilippo Syndrome, a genetic disease that attacks the central nervous system. Most children with the condition die before the age of 20.

 

 

 

 

 

 

 

 

 

 

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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

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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!!!!

 

 

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Sunday April 3, 2016- 2nd Annual Ride for Sanfilippo!

10 am – 4 pm in Delaware!  https://www.facebook.com/events/1761879474089193

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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 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.

/wp-content/uploads/2015/08/cans-across-bw.pdf.     < Black and white label

/wp-content/uploads/2015/08/cans-across-color.pdf   < Color 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


sanfilippo+night+flyer+draft+jpeg


Sunday April 12, 2105- 1st Annual Bike Run!
Newport, Delaware > see flyer for details or FB page   https://www.facebook.com/events/775569605824106/


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Collect Old Shoes, Fund Gene Therapy!

Old Shoes for a Cure

 

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!!

 


Gabo

 

Gabo’s Story

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.

http://newyork.cbslocal.com/2014/02/26/elementary-star-jonny-lee-miller-works-to-solve-sanfilippo-syndrome/

 


Bravelets™ bracelets are worn to help you be strong and brave in tough situations.

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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.

https://bravelets.com/bravepage/sanfilippo-syndrome

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

 

Do you Shop Amazon? If so you can help!!

August 11, 2013 by PattyT

If you are an Amazon Shopper, you can help without spending anything additional !   Please follow this link and shop using “Amazon Smile” to have 0.5% of all your purchases going to Team Sanfilippo for research for the kids!!

AmazonSmile: You shop. Amazon gives. www.smile.amazon.com

 


The NYPD Boxing Club along with Police Commissioner Kelly Wednesday presented Team Sanfilippo Foundation with a check for $20,000 at Police Headquarters. The donation, made possible by June’s charity bout between NYPD and LAPD, will be used to fund medical research in the hopes of finding a cure for Sanfilippo Syndrome.

 

We want to THANK the NYPD,  all the participants, LAPD, and spectators for supporting Team Sanfilippo this year with this awesome event!!  Being presented with the check is the O’Connor Family, their daughter Emily has Sanfilippo Syndrome. Check out Emily’s Page at https://www.facebook.com/Emilysdance

Illinois friends, teachers and family bring awareness and funds for Sanfilippo Syndrome!

March 11, 2013 by PattyT

   I just wanted to share what a wonderful success we, Team Jake Elston had at selling t-shirts to raise awareness and how it became a great      way to support Team Sanfilippo financially as well. We are teachers, friends and family of Jake Elston… 53 t-shirts were sold (which brought $380 in contributions) and three other individuals gave additionally ($220) for Team Sanfilippo; totaling $600 in donations/contributions-through two checks recently sent as well as an online donation.

 
  Above is a recent picture of Jake Elston in his new classroom at LEE Elementary and the a picture of the
 t-shirts we sold.
 
 
 
These are some of the folks who are currently working with Jake and are a part of Team Jake and the recent t-shirt sales to raise awareness. Thank you from Team Sanfilippo for being such a great support to Jake, his family and the Sanfilippo community! It speaks volumes about your character and how much you care!
 
 
These are some of the shirts we wear and sold!

Fundraising / Family Events!

March 6, 2013 by PattyT

 

Sunday May 19, 2013

12 noon – 4:00pm

Emily’s 3rd Annual Fundraiser to Benefit Team Sanfilippo

Gatelot Avenue Eleentary School

See Flyer for additional fun for kids and adults . (Yard Sale begins at 10am) 

This event gets great reviews from everyine who has attended in the past, both adults and children!!


Tee it up at Sugarloaf!

SUGARLOAF TOWNSHIP — Golfers hit the links in Luzerne County Saturday to help find a cure for a rare disease that affects children.

About 120 golfers took part in the third annual Beat M.P.S. Golf Tournament at Sugarloaf Golf Club.

M.P.S. also known as Sanfilippo disease, is a disorder that causes progressive brain damage in children. Those with the disease are not expected to live into their teens.

The tournament raises money and awareness to help find a cure.

The event was organized by Carl Kapes, originally from the Hazleton area. Kapes has two sons with the rare disease. ….. read more here and watch video too! http://wnep.com/2012/10/01/teeing-it-up-for-a-good-cause/

 

BioMarin Acquires Zacharon Pharmaceuticals

January 15, 2013 by PattyT

This is a result of the 2010 Grant we gave thru your contributions, now coming to fruition!! Thank you! Substrate Optimization Therapy Sanfilippo A,B,C and MPSI and II
Zacharon Pharmaceuticals
2010




January 7, 2013
BioMarin Acquires Zacharon Pharmaceuticals

Lead Program Focused on the Oral Treatment of MPS III

Acquisition Augments Existing Analytical Capabilities and Expertise in Glycobiology

SAN RAFAEL, Calif., Jan. 7, 2013 (GLOBE NEWSWIRE) — BioMarin Pharmaceutical Inc. (Nasdaq:BMRN) announced today that it has acquired Zacharon Pharmaceuticals, a private biotechnology company based in San Diego focused on developing small molecules targeting pathways of glycan and glycolipid metabolism.

Zacharon drug discovery projects include two ongoing lead optimization programs, inhibition of heparan sulfate synthesis for MPS III and other MPS disorders, and inhibition of ganglioside synthesis for diseases such as Tay Sachs and Sandhoff. Zacharon’s proprietary SensiPro® platform is a powerful technology for analysis of specific carbohydrate structures and therefore the identification of candidate drugs to treat those conditions.

Hank Fuchs, M.D., Executive Vice President and Chief Medical Officer of BioMarin said, “Zacharon’s lead program, focused on reducing the accumulation of heparan sulfate, offers the exciting prospect of treating both the CNS and peripheral manifestations of MPS III, and potentially other MPS disorders, with an orally bioavailable small molecule. In general, reducing the synthesis of the target substrate alleviates the burden on the compromised lysosomal system, and this therapeutic approach has been clinically validated with other enzyme inhibitors. Zacharon’s deep expertise in glycobiology has generated additional programs for treating lysosomal storage disorders that we expect to progress, and we will leverage that expertise to continue to build BioMarin’s existing research and development pipeline into a sustainably leading pipeline.”

READ MORE….. Full Press Release

Teeing It Up For A Good Cause

October 3, 2012 by PattyT

Posted on: 7:06 am, October 1, 2012, by Dan Ratchford

SUGARLOAF TOWNSHIP — Golfers hit the links in Luzerne County Saturday to help find a cure for a rare disease that affects children.

About 120 golfers took part in the third annual Beat M.P.S. Golf Tournament at Sugarloaf Golf Club.

M.P.S. also known as Sanfilippo disease, is a disorder that causes progressive brain damage in children. Those with the disease are not expected to live into their teens.

The tournament raises money and awareness to help find a cure.

The event was organized by Carl Kapes, originally from the Hazleton area. Kapes has two sons with the rare disease. ….. read more here and watch video too! http://wnep.com/2012/10/01/teeing-it-up-for-a-good-cause/

Chase Giving Campaign 2012 – Congratulations to The Will Luthcke Foundation!

September 21, 2012 by PattyT

Chase Giving Campaign this year had several Sanfilippo organizations that received grants. This was a home run for the sanfilippo community, as this competition is a hard one to win with each person only  able to give 1 -2 votes for any one organziation. You only got a second vote for the same organization if you received a “bonus” vote thru someone voting from a link you posted. 3 votes were pretty much a maximum with 2 possibly going to the same organization.

We are proud to announce that “The Will Luthcke Foundation” of Alabama earned a 50k grant thru the 5095  votes given  to them in this compettion. This organization partners with Team Sanfilippo, helping to fund research to help find treatments and cures for the children!  Two other organization earned 20K grants each as well!!

CONGRATULATIONS!!  AND THANK YOU TO EVERYONE WHO VOTED FOR THIS ORGANIZATION!

 

Good Samaritans turn tough situation into blessing for Blount family

August 9, 2012 by PattyT

  Jennifer and Chester Hembree know what it means to be a family that lives on their faith.

     They saw proof of this recently. Someone stole a generator needed to power their son’s medical equipment, and within 24 hours, someone else had donated a new generator, as well as a new wheelchair lift.

“We said we knew the Lord would take care of us, and the next thing we knew, we were covered up with calls,” Chester Hembree said. “It was like something you would see in a movie. It definitely rings true. This is the Volunteer State, and people step up help.

To read the full story click here http://www.knoxnews.com/news/2012/aug/07/good-samaritans-turn-tough-situation-into-for/

I Tried It: Mount Kilimanjaro Workout with Preston and Steve’s Nick McIlwain

July 26, 2012 by PattyT

 

Two questions crossed my mind as I strolled into East Norriton’s Retro Fitness on Monday afternoon, fully prepared to have my butt whooped: How does someone train to climb a mountain in a place like Philadelphia? And how on earth did Preston and Steve Show producer and on-air personality, Nick McIlwain, who once busted his Achilles on the dance floor at a wedding, get roped into climbing the tallest mountain in Africa?

But as I followed his trainer, Nick Rueger, to the gym floor and caught a glimpse of McIlwain’s face, already glistening with sweat as he worked his arms on a weight machine, I realized this was no time for questions. I hopped on to the elliptical for a quick warm-up. It was time to get to work.  

Rueger set up stations for a circuit workout. First it was 20 squats on the bosu with a medicine ball overhead, followed by 15 seconds of mountain-climbers (why not?!). Next we did 20 weighted rows in a squat position, and I got in 12 (girly) push-ups while McIlwain did 15 or so high jumps onto a platform. Then I did the jumps as McIlwain did his push-ups (they were real ones, I checked). “One down, seven to go,” Rueger said. We completed the circuit eight times.

The conversation loosened as the endorphins began to flow. “So how exactly do you train someone to climb a mountain?”  Read more here… http://blogs.phillymag.com/bewellphilly/2012/07/24/it-nick-mcilwains-mt-kilimanjaro-workout/

Carl Kapes and Nick McIlwain of WMMR 93.3FM didn’t even know each other till recently

July 22, 2012 by PattyT

PHILADELPHIA, PA.; May 15, 2012 (WPVI) —    Carl Kapes and Nick McIlwain of WMMR 93.3FM  didn’t even know each other till recently. But they are about to share a once-in-a-lifetime experience.

Kapes is going to extreme heights to raise research money for the disease affecting his children. And McIlwain, a personality on the Preston & Steve morning radio show, accepted the challenge to go with him.

Kapes will climb 20,000-foot Mt. Kiliminjaro in August, to raise awareness and money to fight San Filippo syndrome, a rare genetic disease.

His sons Ryan and Braden have the disease, which causes enzymes to build up in the brain.

When his sons were diagnosed,  Kapes shifted into activist mode, trying unique avenues to raise research money on Sanfilippo syndrome. He won $500,000 in a Pepsi Challenge, and a $250,000 grant from Vivin. So far, he & other parents raised nearly a million dollars.

And Kapes is continuing the offbeat approach:

“Because the syndrome my children suffer from is so rare, and there’s so many good causes out there, it’s very difficult for me to get people involved because so few people are affected. So i needed to do something completely different to stand out,” he told us today.

See full artilce at http://abclocal.go.com/wpvi/story?section=news/health&id=8642300

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