We are busy, busy, busy making Luau at Lakeside a fun event for the whole family. If you haven’t heard about it head on over to our event page to see what it’s all about.
With splash pad, rollerskating, face painting, full luncheon and a hula dancer, your kids and their friends […]
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Taking to the airwaves
If you missed it, Jonny went on Live with Kelly & Michael, AND CBS News with Kristine Johnson to talk about his run and Sanfilippo Syndrome. There is just no stopping him. Not only can this man […]
PayPal and ebay Are Getting Into The Holiday Spirit Of Charitable GivingThis holiday season, eBay and PayPal are helping nonprofits raise funds and awareness. #GivingTuesday, December 2, 2014, is a global day dedicated to giving back. eBay and Paypal will be launching campaigns to help PayPal Giving Fund nonprofits make the most of this generous day and season. We are encouraging you to join the […] Holiday GivingIt has become increasingly popular to make donations in someone’s name instead of giving a gift. In a world of instant gratification and new gadgets topping old gadgets by the minute, a donation is the perfect gift.
 If you decide to donate in lieu of giving a […] Joana Ricou…Preparing For a Live Painting Performance…for JJBThe very talented Joana Ricou has graciously agreed to tackle a challenge she has never done before, all in the name of raising money for JJB. Like any big win, she has been preparing. This is the blog she put out today: Advocates are campaigning, representatives and the FDA are taking note.Look at what we started. I have to hand it to our friends at the EveryLife foundation and their work with their program the Rare Disease Legislative Advocates. Last February, Jonny Lee Miller and I joined a panel of esteemed stake holders in the rare disease community. They spoke to a packed room of […] The Fix: Friends+Cocktails=CureWe are excited to cordially invite you to… Jonah’s Just Begun, 1st Annual “Rare Occurrence Reception” This special event should not be missed! Hosted by Jonny Lee Miller, from the […] SUPERPOWERS AGAINST SANFILIPPO-SUPERPODERES CONTRA SANFILIPPOThe news could not be better! Xavi Hernández, a famous player with, The Barcelona Football Club, and ambassador of, Obra Social La Caixa Foundation, which is a large bank in Spain, has joined the, Sanfilippo Barcelona Association, an association that funds research projects that help in fighting this rare disease. How are they doing […] |
