One of the constants in PWS is concern for the future.  From the very beginning, we worry.  We worry about what yesterday and today are going to mean for tomorrow.  We worry about the future of our child with PWS.  We worry about the future of our other children, and we worry about our own future.  To make matters worse, we even worry about how much we worry!  As always, we need to move beyond worry to planning and action.  There is no better treatment for worry than this! 

 

Erin is 13, getting close to 14.  There is no denying that adulthood is not all that far away.  Lately, our family has begun to work within a program called Futures Planning.  In this, a family works with a trained facilitator to develop a group of people who commit themselves to helping you dream and plan for the future of your child.  Together, within this group of people who all love your child and have some specific useful skill or resource, you combine your dreams, your energy, your skills, and your networks to put things in place so that as an adult, your child will become an independent, valued and included member of the community, appreciated for her/his uniqueness and strengths.   What a great foundation for a happy, fulfilled life!

 

It is easy to get excited about the results of a program this important, but, as with everything, the work comes first.  Countless hours over several years of meeting, planning, coordinating, and collaborating go into this, but when you keep the goal out there in front, you will find the strength and resources to do whatever it takes to succeed.

 

To broaden this idea somewhat, Futures Planning is not all that different from the upcoming PWS Research Strategy Workshop.  While FPWR was young, we worked hard to fund research and also to cultivate an environment where PWS research was valued.  We have funded 34 projects since 2003 and are very proud of that work.  As our organization has grown and matured, and research in PWS has come to the forefront, we are ready to design a research plan that will take us into the future. 

 

This workshop will assemble a group of some of the most intelligent and experienced specialists not only in PWS, but in fields related to many of the various symptoms of PWS.  As we all know, PWS involves an eating disorder, but it is that and so much more.  Bringing experts from the fields of autism, bipolar disorder, genetics of other imprinted disorders, other eating disorders, and more will create an opportunity for expertise to be shared and ideas to be created.  Together, they will offer their collective skill sets and experience to shine light on the mysteries of this disorder, and help us develop a priority list for research.  The result of this workshop will be nothing less than the development of a path to help lead us toward our goal–effective treatments and a cure for PWS. 

 

With the drain of all of the challenges of living with PWS, we sometimes forget there is much that we don’t yet know that can bring great change.  As much as anything, planning for the future reminds us of the possibility of change and illuminates our potential for success.

 

Planning for the future is extremely exciting whether on an individual level or on an organizational level.  In FPWR, nothing less than curing PWS has always been our goal.  Now, with this workshop, look who’s helping us!  Look at all our resources!  Look at what we’ve done and now look at what we’re going to do! 

 

As FPWR members, we all a part of making this incredible workshop happen.  Whether you have been a fundraiser, a donor, an encourager, or an advocate, YOU have made this day possible.  It is the collective work of ALL of us through ALL the years that has brought us to this point.  With Theresa’s big brain leading our research program and coordinating this conference, FPWR has taken a giant step toward securing the future for the children we all love.  Many, many thanks for all that you all have done and all that you have given to make this workshop possible.  Some years from now, we may well look back and see this as the turning point in the success of PWS research.  That works for me!

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