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22q Campaign Tool BoxEvent Resource Guide
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foundation Facebook page
PMSF BOARD of DIRECTORS
Chairman Emeritus: Dr. Curtis Rogers crogers@ggc.org Founder: Dr. Katy Phelan katy@22q13.org President: Sue Lomas sue@pmsf.org Vice President: Nick Assendelft Treasurer: Priscilla Hackstadt treasurer@pmsf.org Secretary: Veronica Frunzi vfrunzi@att.net
kurt@agrisourceonline.com Teri Dutts louedutts@aol.com Megan O'Boyle megan@pmsf.org COMMITTEE CHAIRS Fundraising: Kurt Koester Communications:
Veronica Frunzi
vfrunzi@att.net
Research Support: Geraldine Bliss gbliss@att.net Membership Chair: Cynthia Schauss
Schauss@cox.net Website: Rich Lomas rich@pmsf.org PMSF STAFF
Barbara Cruz
Executive Director
barbara.cruz@pmsf.org
Cheryl Herbold
Business Manager
Jack Sweeney
Communications/Membership Coordinator
jack.sweeney@pmsf.org
PMSF VOLUNTEER OFFICE STAFF
Rosie Wiley
Nina Wiley
OTHER RESOURCES
CHROMOSOME 22 CENTRAL
http://www.c22c.org
steph.stpierre@c22c.org
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FAST, FREE, EASY !!Sign-up using the LINK below and PMSF will benefit from the online purchases you are already making!!
Or e-mail jack@pmsf.org
to take advantage of this month's
PMSF STORE SPECIAL!
To Shop today click
PMSF STORE _________________________________________ PMSF Is Returning to the Caribe Royale for our 2014 Family Conference so... Save the Date! July 23rd through July 26th, 2014!  Orlando is never at a loss for many fun and exciting things to do, and THE CARIBE Royale is located in the heart of it all. The Caribe is situated on more than 58 tropical acres and provide any number of enjoyable diversions. Offsite, you are minutes from countless activities and events.
Please don't forget! As of January 1, 2013 our Post Office Box address has been phased out. Please send all future correspondence to our physical address below: 200 Capri Isles Blvd, Suite 7F Venice, FL 34292 Thank you.
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Letter from the Vice-President
By Nick Assendelft
Vice President, Board of Directors
Spring is always an exciting time for our Foundation. Not only is the weather turning warmer for many of us, but the Board of Directors meets for its spring
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Members of the Board of Directors
Regional Representatives and Committee members in
Venice in April
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board meeting. This year we met on the last weekend of April and formulated plans for moving forward on international outreach, updating our Web site (which was a topic of my write-up in the March newsletter), planning our 2014 international conference and fund raising.
As usual, it was an inspiring weekend that never ceased to amaze me with how far we've come from the first time PMS families met 15 years ago this summer in Greenville, S.C. That's right, it's the 15th anniversary of the first meeting of the original 20 families brought together by Drs. Katy Phelan and Curtis Rogers. It'd be four more years before we parents decided to establish a Foundation that would serve you and those diagnosed with PMS, which set us on the road to where we are today.
Speaking of international outreach, we have nearly completed our agreement to join up with our Spanish affiliate. And Dr. Phelan and Susan Lomas, president of our Board of Directors, will be going overseas to the United Kingdom next week to be a part of a family conference there. Other families from around Europe also plan to attend, as well as some of our Regional Representatives. Shortly after that, Sue and Megan O'Boyle will fly to Ireland to talk to researchers about our International Registry (are you a part of that?)
Back here at home, we have a couple of exciting fund raisers coming up. First off is Sammy's Run. It's the fifth annual road race and has become quite the event in Sarasota, Fla. Go to sammysrun.org for more information about May 25 contest. And if you're not a runner you can still take part -- through a virtual run. Just follow this link: runanywhereforsammysrun.com. One week later is a golf outing in New Hudson, Mich., west of Detroit. It's being organized in conjunction with Logan's Heroes motorcycle ride through Michigan's heartland and Red Lobster. Check out logans-heroes.org/red-lobster-golf-outing-for-logans-heroes.html for more information. And just a couple of weeks after that is the rescheduled Addi's Angels ride in Georgia on June 15. Go to addisangels.org for information.
As always, you can keep up with the latest news about your Foundation on our Facebook page or at Twitter.com/Phelan_McDermid.
On behalf of the Board of Directors, I would like to wish you and your family a great spring and wonderful summer.
A Fresh Look at iGive
By Jack Sweeney  The potential of iGive remains a vast untapped resource for our foundation.
Established in 1997, iGive is the first online shopping mall where a portion of each purchase benefits the shopper's favorite cause. With the participation of 393 supporters our foundation has raised $4,731 to date. The average shopper contributes $50.00 per year through iGive by making common, standard household purchases. Currently PMSF has close to 2,700 active members.
Amazon, Bed Bath and Beyond, Sears, Lowe's, Macy's and Kohl's are only a few of the over 1,300 stores that participate in iGive. iGive gives PMSF members access to hundreds of exclusive coupons, free shipping deals and sales, you'll find everything from daily necessities to special occasion and holiday gifts. Depending on the store, PMSF can receive up to 26% of your total purchase with no additional cost to the shopper. With iGive, you don't have to choose between buying something or sending a donation to PMSF. Now you can buy the things you need, save money with exclusive iGive coupons and deals, and feel good knowing that a portion of each purchase benefits PMSF.
IGive can help remind you to use the service when you shop online. You can install the iGive "Button" on your computer. The iGive "Button" automatically  monitors the growing list of participating stores to make sure you never miss an opportunity to raise money for PMSF when you shop online. "Install the iGive Button" . iGive lets you control your membership information with a private password. You can review your store visits and purchase/donation history, and confirm the total amount raised and distributed to your cause. iGive values your privacy and will never release shopper information without consent. When you visit our Facebook page, you'll see a new feature: We linked the PMSF iGive account to our Foundation Facebook page so you can see our iGive account activity every month. I sincerely hope that PMSF members will take a fresh look at iGive and the potential that it offers our foundation. Installing the "Button" will not trigger unwanted pop-ups, ads or e-mails and your e-mail and contact information will not be shared.
Registry Insight By The PMS International Registry Coordinators May is National Mobility Awareness month bringing recognition to individuals affected by a wide range of mobility difficulties. As some of us may know, many living with PMS are impacted by some form of a mobility issue whether it be delayed walking to gait problems which require an orthotic to assist with general movement. Also within our community, many individuals require wheelchair assistance and other adaptive equipment in order to facilitate mobility in their everyday life. Did you know that... 60% of the patients in the PMS International Patient Registry have been treated with Orthotics, Custom Shoe Inserts, and/or Braces? Orthotics can improve stability, tone, and gait. They can also help reduce swelling and optimize posture for those with walking difficulties. Please take some time to update or complete your questionnaire and learn more about the varying degree of developmental disabilities that affect individuals with PMS. To learn more, please visit www.pmsiregistry.org 
Region 4 "Virtual Run"
By Taryn Stack
Sammy's Virtual Run New Jersey will be held on May 25th at 11am. Meet up is at Tamaques Park in Westfield, NJ. Please join us for a 1 mile fun walk in support of Sammy Lomas, PMSF and Sammy's School in Sarasota, FL. For more details including registration, contact Taryn Stack at 732-566-4146 or taryn@pmsf.org Be a part of something special! To participate from anywhere in the world click the link below and register:
"Sammy's Virtual Run"
Coming Events...
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