Friday, September 30, 2016

Letter from America

Joan Gardner writes...

One morning, I woke up and found myself the USA Parent delegate to IPWSO with a life full of new friends and amazing experiences.  How did this happen?!

In December of 1968, our son Larry was born and by March we learned from a pediatric neurologist that he had Prader-Willi Syndrome.  Forty-eight years ago, there was no internet and actually only two medical journal articles which Larry’s doctor withheld for several years despite my complaints that we wanted them..  He was “afraid to scare us”!  Really, an exact quote!
Minnesota, our home state, was the repository of PWS information in the early days.  We can take no credit but the first successful dedicated PWS home was founded here for 15 residents by determined parents who collected donations at an exploratory meeting.  They gathered $15 and went to work.  Marge Wett also led the USA national board for 14 years out of her house here and the first and fourth national conferences were in Minnesota.

Somehow, as energy had slowed down in the older families, Jim was elected president at a PWSA of MN meeting that he had not even been able to attend.  The serving president had just discovered that his daughter had Angelman’s Syndrome not PWS (there was no PWS specific genetic testing in those days).  We began gathering and networking our Minnesota families.  We had a pool of names and old attendance sheets in a tin box that still smelled of old cigarette smoke.  Jim also served as treasurer of PWS USA for many years.  We became devoted attendees of the USA annual conferences where we learned all the new research and management advice, such as it was at the time.   Still there was no internet.

Fast forward to 2001, as complete amateurs, we are hosted a combined IPWSO and PWSA USA conference in Minnesota.  There were 1250 attendees: over 200 scientists, 120 professional caregivers, 300 people with PWS including babies and adults (and required 100 volunteers a day!) and 500 plus parents.  We had no staff and little experience but an amazing cadre of volunteer friends and truly expert international program chairs.  I still cringe when I enter the conference hotel but it was a huge success and even provided funds to MN, USA and IPWSO for future programming.  We were very lucky!

Larry and his best friend

IPWSO has taken us to Italy, Romania, Taiwan, New Zealand, Cambridge and of course Canada.  Attending an international or regional conference is an incredible experience and worth every extra effort.  There are scholarships if one needs financial help to attend.  If you can afford it, contributing to someone else’s experience is just as rewarding.  PWS conferences are unique.  The experts come to share with each other in order to advance PWS knowledge and management.  Even more amazing, they come to share their time openly with us, the families and our children.  Informal encounters in the hall, lobby or meeting breaks are times to connect with them.  They welcome us and no one is too important to spend time with an interested family.
Larry with the biggest fish!

Remember, if you choose to host a conference, IPWSO will help as best it can to assist with expertise and experts.  One physician even learned Spanish to be able to talk directly with families at a South American regional conference!  However, IPWSO can only help as much as funding permits.  As you balance your busy life, please make a donation to IPWSO a priority if you can.  Perhaps, you have family or friends who care about your child and would like to show this with a gift to IPWSO.  Right now, all new gifts will be doubled with matching money from a generous foundation.  This is an opportunity to help others receive a diagnosis, learn how to care for their child,
receive information in their own language, attend a conference, or even put on a program for the first time.   Sharing together is what has brought us to this extraordinary level in Larry’s 48 years.  Let’s keep this going!

If you care to donate to IPWSO, just click on the iDonate button above.  You donations will be in Euros and will be matched by the KB Anderson Trust until the end of this year.  We are so grateful for your donations which help our work around the world!

1 comment:

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