We Put The Fun in Fundraiser!

It is January 2012, and whenever the calendar page is turned to a new year, the fresh start brings an upsurge of hope and excitement.  This is the feeling here in the “bricks and mortar” heart of the PWS community, a.k.a. the offices of PWSA (USA).  We know, though, that the lifeline of everything we do here is actually all of the individuals with PWS, and those who care for them, all around the world!  And we wish all of you a happy, healthy, and peaceful 2012!

We also wanted to bring you a summary, as we look ahead through the months of this year, of all the different ways you, and your extended families, friends, acquaintances and communities can help us raise awareness of PWS and build an even stronger support network.  As stated in an earlier blog post, “at PWSA (USA), serving, supporting, and strengthening families is a key part of our mission.  In fact, a commitment to families is part of the ”DNA” of PWSA (USA) because we were started over 30 years ago by a few families who gathered together to create the support they could not find anywhere else.  Because of their commitment and vision, PWSA (USA) exists today to serve a new generation of people and families living with PWS.”  As PWSA (USA) continues the important and crucial work of providing assistance to and improving the lives of individuals with PWS, the following efforts are ways in which you are able to give the work we are doing a “thumbs up”:

• The Angel Card and “This Is My Association”:  You have all received your Angel Card brochure in the mail, and many of you were the first to see the “This Is My Association” video during our National Conference in Orlando in November.  If you and your family members have already donated to this effort through the Angel Card Campaign, thank you!  If you would like to view the “This Is My Association” web page, the link is www.thisismyassociation.org.  There is also the opportunity to donate securely online through that web page, and please know that any and all donations are very much-needed and appreciated!
• “Prader-Willi Syndrome On The Move^SM: “On The Move^” (OTM) Event Planning Season has begun!  While it seems as if the 2012 May Awareness Month is a long time off, really it is just around the corner!  We have several fun new things happening with the OTM campaign for 2012.  General OTM planning packets and event-specific packets are available now on the OTM dedicated webpage, www.pwsausa.org/onthemove , so we hope you will check your calendars and choose an event and a date now!  Watch this blog, your e-bulletin, the PWSA (USA) website, and our Facebook page for more information, coming very soon!  We are very excited to see all of the fantastic accomplishments in raising awareness and in fundraising for this year’s On The Move^SM campaign….will YOU be On The Move^SM?
• “Spare Your Change! for PWSA (USA) Research”: Those of you who attended the conference in November will recall that you had the opportunity to place your spare change in collection jars specifically labeled with the phrase above.  You were invited to take some of those same labels home and continue consolidating all that loose change, in support of the efforts of PWSA (USA) to advance PWS research.  We hope your “change efforts” are adding up!  Additional labels can be obtained by calling our office, 1-800-926-4797.
• Grassroots Fundraising: We also want to let you know that awareness and fundraising efforts are welcome year-round!  These can be as simple as a neighborhood car wash or as elaborate as your imagination, energy, and volunteer help can make them!  Funds raised through these efforts can be designated for support services, for research efforts, or some combination of the two.  We are happy to provide you with an information Fundraising Packet which will give you event ideas and help you through all the planning stages – call our office!

We are excited for all of the amazing things our PWS community will accomplish in 2012 – it is going to be a FANTASTIC year!

PWS Best Practice Guidelines Now Available!

In many ways, creating useful resources to support the quality of life and care of people with Prader-Willi syndrome (PWS) is one of the most important ongoing tasks of PWSA (USA).  Visitors to our office are often impressed by the size and scope of our Resource Room which houses many of the publicatons and videos we regularly send out across the world to support people living with PWS.  

The PWSA (USA) Resource Room

What’s not as obvious is the amount of time and work that goes into creating these fabulous resources.  If a donor is wondering how their money makes a difference through the work of PWSA (USA), resource development provides a substantial part of the answer.  It takes an enormous amount of staff time to create a good resource.  Whether it is coming up with an idea through our crisis, family support or research program or taking that idea to the next step of development – the staff at PWSA (USA) play a crucial role in nurturing the process along.  From recruiting and bringing together volunteers and professional experts to contribute to the content of a resource all the way to (in many cases) publishing in house the resource once it is developed.  And then there is the challenge of spreading the word about a new resource, taking and filling orders, and as time marches on revising and updating a resource as needed.  So every time you see a new video, publication, or alert, available through PWSA (USA), remember that this represents the end of a very long journey of development.  It often is a tedious and not very glamorous process but it is an essential part of filling our mission.

 

A good example of the value of this process is the PWS Best Practices Guidelines which is one of the most exciting new resources in years and is the culmination of collaborative work done by PWSA (USA) and others from the PWS community across the world who participated in the International Prader-Willi Syndrome Organization Caregiver Conferences over the past two years.   Between the conferences, international teams worked tirelessly to advance the development of this incredible repository of PWS information.

 

PWS Best Practice Guidelines CD

Available in book or CD versions ($55.00 each), this resource contains over 200 pages of timely information for parents, caregivers, teachers, residential and other providers.  It includes strategies for behavioral management, school and employment success, crisis management, improved nutrition, better exercise, enhanced communication between families and caregivers, and so much more! 

I am particularly excited PWSA (USA) is part of distributing this groundbreaking resource to the PWS community because in 2008 as a PWSA (USA) Crisis Counselor I was privileged to participate in the first of the conferences convened to produce this resource in Herne, Germany.  It was an amazing opportunity to share ideas about how we can improve the quality of life of people living with PWS in every country.  I came away with a strong sense that this type of interaction with the international PWS community on issues of support is a terrific benefit for the PWS community in the United States.  And I am so happy to see those conversations at the Herne conference and beyond now easily accessible for all to benefit from in this exciting resource.  So I hope you will give strong consideration to ordering the PWS Best Practice Guidelines by calling 800-926-4797.

Evan Farrar

PWSA (USA) Executive Director

Awareness Doesn’t End With May!

With the end of Prader-Willi Syndrome Awareness Month in May it is a good time to remember that promoting Prader-Willi syndrome awareness– like supporting people living with PWS and their families -is important every single day of the year.  So, even as our first May Prader-Willi Syndrome On The Move campaign “officially” winds down we urge you to contact us if you would like to plan an awareness event in your community in the months ahead.  We would be happy to help you think through the possibilities.  Large, or small, these events make an enormous difference in the lives of people living with PWS. 

One of the ways we know this is the dramatic change in the past decade of age of diagnosis for a child with PWS.  In the past, it was very common to have a diagnosis at 10 years of age or later.  Now, thanks to the hard work of spreading awareness by the PWS community, children born with PWS are much more likely to be diagnosed at an earlier age.  For example, during the month of May PWSA (USA) received 12 calls from parents whose children were recently diagnosed with PWS all under the age of 5.  Why is this important?  Because an early diagnosis means implementation of critically important early interventions such as good nutritional  and food security practices as needed, physical and other important therapies and treatments, crucial early support for parents of a child with PWS so they have accurate and helpful information, and perhaps most importantly connecting families with other families raising a child with PWS so a parent with a newly diagnosed child does not feel so alone.  All of these elements of an early diagnosis help to improve long term outcomes not just for children born with PWS but their families as well. 

At PWSA (USA) serving, supporting, and strengthening families is a key part of our mission.  In fact, a commitment to families is part of the ”DNA” of PWSA (USA) because we were started over 30 years ago by a few families who gathered together to create the support they could not find anywhere else.  Because of their commitment and vision, PWSA (USA) exists today to serve a new generation of people and families living with PWS.  And a key component of serving the PWS community is offering a National Conference where families and professionals can come together to support each other and learn about new research, resources, and information to help improve the quality of life of all people with PWS regardless of age.  In 2011, our National Conference will be held in Orlando, FL from November 11-13 and you are invited to attend.  Registration will begin soon!

This national gathering is an important but challenging project for a small agency like PWSA (USA) to manage and fund.  One of the ways we can make conference affordable is by recruiting Conference Sponsors.  So, if you or someone you know (or a business) are interested in supporting this event, please go to http://www.pwsausa.org/conference/2011/exhibitors-sponsors.htm to learn how.  As one sponsor described the PWSA (USA) National Conference, “…this is such a great cause as it drives so much awareness and education for so many.”

With the launching of several new channels for generating increased PWS awareness in May, and a national conference coming in November, these are exciting times for the PWS community!   We hope you will keep coming back to read our blog – and invite others to join you – as we continue promoting PWS awareness throughout the year.

Evan Farrar,  PWSA (USA) Executive Director