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This Will Be Our Year, We Have Only Just Begun

This winter we will be launching our Giving Tuesday Campaign through Crowdrise Giving Tower.  Our theme is “This Will Be Our Year-We’ve Only Just Begun”.  Inspired by the song “This Will Be Our Year” covered […]

By | November 11th, 2015|Uncategorized|Comments Off on This Will Be Our Year, We Have Only Just Begun

Patients Can’t Wait

Patients Can’t Wait

Today, patient advocates from across the country will unite in a day of action to urge the Senate to make medical innovation a top priority. 

In July, the House passed historic legislation, called the 21st Century Cures Act, by a wide bipartisan margin (344-77!!!).  The bill contains vital provisions that […]

By | September 22nd, 2015|Uncategorized|Comments Off on Patients Can’t Wait

Rose F. Kennedy Intellectual & Developmental Disabilities Research Center Newsletter.

Living With Lysosomal Disease

In a break with the past, Einstein’s 2015 celebration of Rare Disease Day focused not on the idea of rare disease generally but instead highlighted the lives of individuals living with a distinct group of 60 syndromes known as lysosomal storage disorders (LSDs). This focus was chosen as a way of celebrating […]

By | August 27th, 2015|Uncategorized|Comments Off on Rose F. Kennedy Intellectual & Developmental Disabilities Research Center Newsletter.

The Quest To Find The Patients For A Rare Disease

The Quest To Find The Patients For Sanfilippo Syndrome Type D or MPS III D

For major diseases like diabetes, hypertension and cancer there are literally millions of patients, you probably know one or more person with one of these diseases, you may even have one of them. But when it comes to a rare disease […]

By | August 14th, 2015|Uncategorized|Comments Off on The Quest To Find The Patients For A Rare Disease

Luau at Lakside Prospect Park, you won’t want to miss this!

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 […]

By | June 30th, 2015|Uncategorized|Comments Off on Luau at Lakside Prospect Park, you won’t want to miss this!

Contest Winners Announced!

By | May 28th, 2015|Uncategorized|Comments Off on Contest Winners Announced!

Just Three Days Until Jonny Lee Miller Runs 50 MILE!

 

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 […]

By | April 29th, 2015|Uncategorized|Comments Off on Just Three Days Until Jonny Lee Miller Runs 50 MILE!

PayPal and ebay Are Getting Into The Holiday Spirit Of Charitable Giving

This 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 […]

By | December 1st, 2014|Uncategorized|Comments Off on PayPal and ebay Are Getting Into The Holiday Spirit Of Charitable Giving

Holiday Giving

It 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.
holiday-donations

If you decide to donate in lieu of giving a […]

By | November 28th, 2014|Uncategorized|Comments Off on Holiday Giving

Help Us Win A Chance to Put Sanfilippo In The Spotlight

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PM&CO is a New York based full service marketing firm that has worked with big names such as HBO as well as non-profits like the Brooklyn Public Library.  They are holding their second annual contest,

By | November 7th, 2014|Uncategorized|Comments Off on Help Us Win A Chance to Put Sanfilippo In The Spotlight