Mickey's Latest

Mickeyfest 2018

Mickeyfest, Save Mickey, Grinch, Rockin' in the Park

Thank you to everyone who made the first Mickeyfest a smashing success!  
Bands included  Spokey Speaky, Bullbuckers, Grinch, Fat Daddy Has Been, Caravan,  Phatboddum, Brixton Saint and Xtra Altra, Steve Pepper Band, and Andrew Bedell Collective.  The thousands of attendees who came out despite the rain, our generous sponsors, dozens of volunteers, Rolling Revolution food trucks, and our gracious host, Delaware Park,  came together as a community to help Save Mickey!


Please join us in supporting those that helped us raise funds to cure Sanfilippo Syndrome, including the News Journal which published an article about Mickeyfest to help get the word out!

Miracles Happen!

Save Mickey Infusion

Mickey was accepted into a clinical trial! Here she is watching Frozen during her first infusion of the experimental treatment- she had no idea that as the first human to receive it, she was making medical history! 


As the first subject, she is receiving a low dose of the experimental medication  to ensure it is safe. Children after her will receive larger amounts until the perfect dosage is found and, God-willing, brought to market.  


Although her family is restricted from sharing details in order to protect the integrity of the study, they are praying this could at least slow the disease's progression.  Please keep not only Mickey but the other enrolled children in your prayers as they embark on this journey! 

Mickey's Wish

Mickey biting Mickey Mouse's nose Sanfilippo Syndrome Make a Wish

Make a Wish blessed Mickey and family with an amazing trip to Give Kids the World Village! Mickey had an incredible time. She especially loved the rides, the horses at GKTW, and meeting her buddy Mickey Mouse. (She couldn't resist giving his nose a little nibble!) She even started coloring again! 


Please join us in thanking the  wonderful MAW volunteers who made her trip possible, and the incredible team at GKTW. It was the trip of a lifetime!

Miles (and miles and miles and miles) for Mickey!

Newark father Kevin Dempsey ran the 103 mile MMT Ultramarathon to raise funds for Sanfilippo research! He ran for over 31 hours straight, through Virginia mountains, with no sleep. He even ran in the rain at some points! The course was very difficult, with over 25% of runners dropping out, but Kevin stuck to it and raised over $2,500 to Save Mickey! Thank you, Kev!

Jody Parting Gift

Newark artist Jody Crouse passed away suddenly in April. He was a dear friend who donated several paintings and photographs to Save Mickey auctions, and never missed an opportunity to volunteer at our events. In May, Jody's friends  auctioned off his artwork to assist Jody's family with his final expenses. The remainder of the funds raised were donated to Save Mickey to fund Sanfilippo research. We're touched beyond words. Thank you from the bottom of our hearts to everyone who participated in and organized the auction, and thank you once again to Jody!

Mickey's Sign

Mickey has started running into the street- she can't understand the danger or see and hear the cars coming. Needless to say, we've been terrified! We requested a deaf child sign to caution drivers that she can't hear them. It was installed within days! We deeply appreciate Delaware's State Council for Persons with Disabilities for moving so swiftly to help keep Mickey safe. 

Kids Saving Kids!

Lauren's Special Birthday Gift

This little lady, Lauren, asked all her friends to donate money to Sanfilippo research for her birthday instead of buying her toys.  We were so touched that someone so young would do something so selfless. Her parents should be very proud of her!

Shoes to Save Mickey

11-year old Blakely Stawicki organized a shoe drive to help Save Mickey! She collected 4, 425 pairs of new and gently used shoes to raise money for Sanfilippo research through Funds2orgs. Blakely thought this up all on her own and took the initiative to make it happen. You can read all about her efforts here!

Rare Disease Day at AI Dupont

Two remarkable young ladies from Middletown High, Ashten and Jess, spent Rare Disease Day at AI Dupont Hospital raising awareness of Sanfilippo Syndrome! As part of their organization HOSA- Future Health Professionals- they researched the disease, made a very informative poster and presentation to all of the attendees, and even raised funds to fight Sanfilippo. We're very grateful for all of their hard work! 

The Kunicki Boys' Lemonade Stand

When Mickey's friends the Kunicki's found out that she was sick, they decided to pitch in! The boys held a lemonade stand in September to raise awareness of Sanfilippo, and it raised almost $200 to help push Sanfilippo research forward! We are very proud of them and touched by what they did. Thank you to the whole Kunicki family! 

More Updates

Going Places!

Mickey loves her new stroller! It’s built to last her for many years and will help her family travel, take her out in public safely, and of course help her get around when she’s too pooped to walk! You can check out a video of her first impression right here. 

Wil-Del M/C Sanfilippo Ride

 

Thank you for joining us for the Wil-Del M/C's 4th Annual Sanfilippo Ride, which began at Brandywine Springs Park and ended with a BBQ at Skipjack Dining. Not only did we raise funds for a great cause, we had a great time doing it! 

Thank you especially to the other families whose children have Sanfilippo Syndrome for coming out. It was wonderful to meet you and your beautiful children!

Movies On Tap

  The great people at Penn Cinema on the Riverfront and Stone Brewing hosted a wonderful event in April! Everyone enjoyed drinking Stone's great beer and watching Airplane! on the big screen. Thank you to everyone who came out to join in the fun and Save Mickey! Check out the Movies on Tap facebook page for more info on these great fundraisers! 

Chefs Unite Dinner & Documentary Debut

Thank you to everyone who joined us March 12th at Deerfield for the second Chefs Unite dinner! It was the public debut of The Weight of a Mountain , a documentary about Sanfilippo Syndrome by Dan Salvo. Dan, fellow Sanfilippo parent Carl Kapes, and other climbers summitted Mt. Orizaba for Sanfilippo research. Please check out summmittothesun.com for more information. We especially thank all the chefs who participated, the donors of our auction items, and  our volunteers who made this event possible. 

Tom Foolery's Jack Daniels Chili Cook-Off

Tom Foolery's Chili Cook-Off

The great folks at Jack Daniels and Tom Foolery's restaurant and bar hosted a Chili Cook-Off to raise funds for Team Sanfilippo! Thank you to everyone who came out on February 8th to sample and judge. Special thanks to our guest chefs Damian Durnin, Melissa Ferraro, Mike Ferraro, Sean Howell, Jance, Pat Niland, Don'ta Whitley, and Tomfoolery's own Mike Rentz. who took home the prize! Together we raised almost $700 for Team Sanfilippo!

Chefs & Rockers Unite

Ryan Cormier of The News Journal wrote an article about Mickey in early December that explains beautifully how the Delaware restaurant and music communities have come together to help Mickey fight Sanfilippo Syndrome. The full article on this amazing community support is online here. Thank you again to everyone who has generously contributed their time, talent, and donations. Together we can Save Mickey!

Santa & Bluegrass, Mac & Cheese and Pizza

Some things just go surprisingly well together! Thank you to Pietro's Pizza at Argilla Brewing Company, The Sin City Band, Santa, and to everyone who came out to the pizza party benefit! Mickey had a great time dancing with everyone and she loved the Mac & Cheese pizza, too. She even took her Mommy's slices! 

Between the fundraisers and Pietro's kindly donating the proceeds from Mickey Pizza and Mickey Juice, you raised almost $2,000 for Sanfilippo research! Thank you from the bottom of our hearts!

FDHB Reunites at Logan House

Thank you to everyone who came out to the Logan House on December 2nd! It was a great time with great people and great energy, and together we raised several thousand dollars for Sanfilippo Syndrome research! We all had so much fun- we're hoping Fat Daddy Has Been won't wait another four years for their next reunion show! Stay tuned! 

The Newark Post

Save Mickey Sanfilippo Newark Post

In early November, The Newark Post  wrote an excellent article about Mickey to spread awareness of SanFilippo Syndrome and help us promote our upcoming fundraisers! You can read the full article here.  Thank you to our hometown paper for helping us get the word out and Save Mickey!

Research News

Several dedicated Sanfilippo Research Foundations have joined together to give Abeona Therapeutics a $13.85 million dollar grant to help their research advance swiftly!


For more info, please check out the full press release here.


WSTW Hometown Heroes

WSTW Hometown Heroes host Mark Rogers interviewed Fat Daddy Has Been to promote the upcoming Logan House show and to raise awareness of Sanfilippo Syndrome! The segment included tracks off of each of FDHB's albums as well as some live in-studio performances. You can hear a podcast of the 11/26/17 show for another two weeks here on the Hometown Heroes Website . We truly appreciate WSTW's support and especially Mark Rogers' help as we fight to Save Mickey! 

Thanks, Dance Bullies!

Thank you so much to everyone who came out to Tailgates for the country line dancing fundraiser in September! Mickey had so much fun dancing along!


Big thank you to the Dance Bullies for designating their cover charges for the evening to Mickey's fundraiser!