Nonprofit

Save Mickey Association: Curing Sanfilippo Together

Save Mickey Association: Curing Sanfilippo Together

Save Mickey Association: Curing Sanfilippo Together
Save Mickey Association: Curing Sanfilippo Together
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CURRENT NEWS

Chefs Unite to Save Mickey III

Join us for the third annual Chefs Unite to Save Mickey and Cure Sanfilippo Dinner! Featuring culinary delights from 12 incredible chefs, live music, a top-shelf open bar, and silent auctions. This will be the greatest Chefs Unite dinner yet!

For tickets, please visit our website: https://savemickey.com/chefs-unite-2019

Don't wait, this event will sell out! Our chefs this year include:
  • Chef Robbie Jester – High 5 Hospitality
  • Chef Mandrill Whitley – Ulysses Gastropub
  • Chef Sean Howell– 2 Stones Pubs
  • Chef Dan Tagle – Krazy Kats
  • Chef Don'ta Whitley – Skipjack Dining
  • Chef Leah Suzanne – Hotel Du Pont
  • Chef Marty Downs – Oakland, California
  • Chef Micheal DeGregory – Manhattan, New York
  • Chef Dave Lattomas – Culinary Arts Instructor, St. Georges Technical H.S.
  • Chef Melissa Ferrarro – Sonora at the David Finney Inn
  • Chef Andrew Thorne – Homegrown Café
  • Chef Bill Wallen – Grain
  • Chef Jason Barrowcliff – Brandywine Prime
Check back soon for the full menu!
Category: Curing Sanfilippo
Mickey's Story
Michaela ("Mickey") Merrill is 5 years old and suffers from Sanfilippo Syndrome (also known as MPS III), a terminal genetic disorder often referred to as Childrens' Alzheimer's. Mickey is a bubbly, delightful little girl with a big belly laugh and a giant smile she shares with everyone. She loves her Bear and likes to show off "her baby" little sister Maya. Most of all, Mickey loves to ROCK OUT on the drums!

Michaela was a happy, seemingly quite healthy baby. As the disease progressed, however, she began to lag behind developmentally, especially in speech. Doctors found out she has hearing loss and is nearsighted, and ran tests to see if these issues were related. The testing unexpectedly discovered that she has Sanfilippo. Mickey has subtype-A which is the most common and also, unfortunately, the most severe.

As the disease progresses, children with Sanfilippo like Mickey lose their abilities to speak and understand, to walk, and to eat. The current life expectancy is 10-20 years, with an average age of death of only 15 years old. 

Currently, there is no treatment or cure, but promising research is happening as we speak in both the US and abroad, so there is still hope for her. With the degenerative nature of this illness, time is precious.

Why We Fundraise
Since MPS-III is a rare disease- only 1 in 70,000 births- much of the research that has been done has been privately funded by dedicated groups of parents. We are raising funds to contribute to find a cure and treatments for Michaela and all kids like her who have this terrible disease. We also raised funds to offset the cost of her care and help us support her as we live far from home for her to participate in a study that could save her life-  expenses like travel, health insurance, and medical supplements.
Testimonial:
Strong amazing people doing great things to find a cure for this terrible disease!
Allison Ritter Piser ~ Facebook