PWSA

8 current topics

1) 1st International Hyperphagia & 2009 PWSA (USA) Conference Registration is Open

Parents are welcome to register as Observers for the Prader-Willi Syndrome Association (USA) Scientific Conference June 4 and/or the 1st International Conference on Hyperphagia June 5 at the Hyatt Regency – Inner Harbor in Baltimore, MD. The Observer fee is $175 for one day or $300 for both days. An optional keynote dinner June 4 costs $25 for registered Observers or $75 for guests. See www.pwsausa.org/conference for details or to register for the conference and hotel. Late fee of $25 applies for registrations after May 15.

We thank our sponsors: The Foundation for Prader-Willi Research, Prader-Willi Families of Ohio, and Prader-Willi Alliance of New York. Can you think of other potential sponsors? Drop me a line at cpolhemus@pwsausa.org or call 800-926-4797 with your suggestions, or to make a personal contribution toward conference costs.

2) Alert your U.S. Representative to PWS Awareness Month Resolution, H. Res. 55

A bipartisan group of U.S. Representatives have introduced H.Res. 55, supporting higher research funding for PWS and federal recognition of PWS Awareness Month. To contact your Representative and urge him or her to consider co-sponsoring H. Res. 55, call (202) 224-3121 or go to www.house.gov, where you can use your zip code to identify your local Representative.

And make plans for your own Awareness event this May. Go to www.pwsausa.org/Awareness/EducationalAwareness.htm for more information, or go to www.firstgiving.com/pwsausa to set up a personalized fundraising page.

3) Call for Board Nominations and Committee Volunteers

We are seeking volunteers to run for the Prader-Willi Syndrome Association (USA) Board of Directors or serve on committees. Call me or email info@pwsausa.org to express interest or for more information.

4) Providers Please Note

The 2009 Providers Conference is June 4 and 5 at the Hyatt Regency – Inner Harbor in Baltimore, MD. (An incorrect date was published earlier.) The fee is $175. Care providers only. See www.pwsausa.org/conference for more information or to register.

5) PWSA (USA) Fiscal Condition

Due to financial challenges, PWSA (USA) eliminated 3 positions in administrative, managerial, & fundraising areas. No jobs in family support or research were eliminated.

Last year we cut budgeted non-research costs by $175,000 (12.9%), so preliminary financial results for 2008 are just above break-even thanks to a major fundraiser by Eastside High School in SC for crisis & family services. For 2009, the Board adopted a non-research budget cutting another $110,000 (9.3%). We’re acting to match expenditures with declining revenues.

Meanwhile, bad financial news continues to come in – a foundation funding our awareness work called one day renewing our $20,000 annual grant, then called the next day to retract, saying they were making no grants this year after all. Donated funding for crisis expenditures directly on behalf of families dropped by half. And of course proceeds from our reserves have dropped. We will serve families as cost-effectively as we can.

6) Monthly Donation Opportunity Now Available

Can you make a regular monthly donation? Automatic monthly, quarterly, or annual donations to the Prader-Willi Syndrome Association (USA) can now be set up through the “Donate Now” tab on our website at www.pwsausa.org. Please consider this new giving opportunity – every little bit helps! Be one of the first to sign up for automatic monthly donations.

7) New Crisis Resource Pages On-Line

The Prader-Willi Syndrome Association (USA) now has a non-medical crisis section on our website. We hope having these online resources available around the clock will help prevent some non-medical crisis situations. The crisis resources are designed to help equip families respond more effectively to a non-medical crisis when it develops. You can reach the non-medical crisis resources from www.pwsausa.org by clicking on the non-medical crisis button on the right.

8) Sign up to Get The Gathered View Electronically

To receive The Gathered View — newsletter of the Prader-Willi Syndrome Association (USA) — by email, sign up at www.pwsausa.org/emailGV.htm.

Well! Yet another blog!

Finally entering the 21st century, I am launching this blog to communicate informally about Prader-Willi Syndrome.

Other communications mechanisms include:

* the Prader-Willi Syndrome Association (USA) website, www.pwsausa.org;

* our Facebook page, http://apps.facebook.com/causes/118816?m=9ec65&recruiter_id=18668118;

* our bimonthly newsletter, the Gathered View, available in hard copy or electronically;

* multiple email support groups accessible at www.pwsausa.org/egroups;

* email (cpolhemus@pwsausa.org);

* fax (1-941-312-0142);

* snailmail:  Prader-Willi Syndrome Association (USA), 5717 Potter Park Drive, Suite 500, Sarasota, F: 34238; or

* telephone (1-800-926-4797 or 1-941-312-0400).

I look forward to chatting with you all!

                               Craig

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Craig Polhemus

Executive Director

Prader-Willi Syndrome Association (USA)

8588 Potter Park Drive, Suite 500

Sarasota, FL 34238

Voice (800) 926-4797 ext. 720

Direct line (941) 487-6720

Fax (941) 312-0142

www.pwsausa.org

cpolhemus@pwsausa.org 

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