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.............................................."An International Alliance of Support and Science"

PMSF Will be returning to the Caribe Royale
By Jack Sweeney

PMSF is pleased to be returning to the Caribe Royale Hotel and Convention Center on July 23rd through July 27, 2014 for our nineth biennial Family Conference.

Located just minutes from world famous theme parks and attractions The Caribe Royale boasts 53 tropical acres, 1,218 spacious one bedroom suites, 120 two bedroom lakeside villas and an expansive state of the art meeting and conference facility. At the heart of the Caribe Royale is their 250,000 gallon free form pool complete with its winding 75 foot waterslide additional amenities include tennis, spa services and a fitness center to name a few.

With the popularity of our biennial Family Conference growing our 2014 conference promoises to be the biggest and best conference to date. Activities are planned for every member of the family in addition to the support of other families living with PMS. Please save the date and begin making plans to join us in Orlando.

Please feel free to call our PMSF office at (941)-485-8000 or e-mail This e-mail address is being protected from spambots. You need JavaScript enabled to view it with any questions.

PMSF places first in 36 Hour Giving Challenge, raising $145,000
By Jack Sweeney

Families and friends of the Phelan-McDermid Syndrome Foundation raised about $145,000 during the 36 Hour Giving Challenge in March.


That was good enough to place the Foundation in first place among 285 non-profits participating in the Giving Partner program through the Community Foundation of Sarasota County, Fla. Groups as diverse as Habitat for Humanity, The Sarasota Ballet and the Cat Depot competed for more than $645,000 in matching funds and incentive grants.


Initial planning began just under one year ago with the creation of the Foundation's "Giving Partner Profile," a mandatory step for participation in the event. Around the first of the year, an "All in" approach was approved and a five pronged strategy was developed to support our "Stay Awake and Donate" campaign.


Foundation members around the world shared our campaign with their friends and networks of contacts through Facebook, Twitter and phone calls. More than $90,000 was raised from donations from 40 states and 15 countries including Australia, Denmark and Japan. Follow the links below for maps of states and countries represented among our donors. The Foundation also won incentive grants of $26,000 and matching funds totaling nearly $30,000.


"Amazed, inspired, grateful. That's how your generosity has made us feel and simply saying "thank you" just doesn't seem enough to express our appreciation," said Executive Director Barbara Cruz and Board of Directors President Susan Lomas.

"Thank you for driving all over Quebec to access as many wireless networks you could find to drive up our number of profile clicks!

"Thank you for clicking on our profile from the 48 computers in your computer lab!

"Thank you for continuing to eat Lucky Charms at 1 a.m. because you felt this was the reason for an increase in donations!

"Thank you for bringing the "Rally Hat" and wearing it when we needed a wake up!

"Thank you for trying to stay awake with us for 36 hours but eventually succumbing to sleep and alas, waking up with the perfect keyboard mark on your forehead!

"Thank you for completely exhausting your keyboard while posting on Facebook for 36 hours straight!

"We could go on and on with thank yous but our biggest Thank You is for being with us through the 36-hour event, for spreading the word, for refreshing again and again and for donating! Your generosity is inspiring!"


CLICK HERE TO SEE 36 HOUR GIVING CHALLENGE WORLD MAP


CLICK HERE TO SEE 36 HOUR GIVING CHALLENGE USA MAP
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Phelan-McDermid Syndrome Foundation awards third research fellowship grant

The Phelan-McDermid Syndrome Foundation has chosen Dr. Sally Kim of Stanford University to receive the P-MS Foundation’s    third research grant under its fellowship program to study interactions between cell neurons using a unique “stealth” probe technique.

Dr. Kim has been awarded $80,000 over two years to test the cutting-edge procedure. Her work will gauge how the neurons react to stimuli that could ultimately benefit those with Phelan-McDermid Syndrome.

“This is the third fellowship we have awarded,” said Susan Lomas, President of the Phelan-McDermid Syndrome Foundation Board of Directors. “We are very excited about the work Dr. Sally Kim will be doing and we think the results will help improve the quality of life for those with Phelan-McDermid Syndrome.”


click here to read full article


DR. Sally Kim

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$22 for 22q in 22 Days

It’s TIME to TURN up the HEAT!

With the 2012 Conference behind us it’s time to turn the dial up on the $22 for 22q fundraising campaign. Some of you have already held a $22 for 22q fundraiser this year or have one planned and the PMSF Board of Directors can’t thank you enough for your efforts. Perhaps some of you did the campaign two years ago, but did not do it last year. And, for some of you this is a new idea. Together we can make a difference in the lives of those affected by PMS. We hope to reach our lofty goal of $125,000 by the end of the year!

Two years ago the response to the newly launched PMSF-unique $22 for 22 q campaign was outstanding. We raised more than $100,000 from August to December 2010. Ninety-one families stepped up to the plate that year. With more and more families joining the PMSF family these days we believe our goal of $125,000 is attainable.

We can’t stress enough how easy this campaign is to conduct. A $22 for 22q Campaign resource guide was made available at the conference. It gives you all the information you need to launch your own campaign. Reach out to the Foundation office at 941-485-8000 if you would like a copy of the resource guide.

Can we count on YOU to make an IMPACT on behalf of those affected by Phelan-McDermid Syndrome? Start planning your $22 for 22q fundraiser today!

(read more).

Kurt Koester – Kylie’s Dad

Urbandale, Iowa
Fundraising Committee Chair

Phelan-McDermid Syndrome Foundation

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