The Board of Directors of FPWR recently met in Los Angeles for our semi-annual board meeting. This is always an exciting time for us since it gives us an opportunity to work face-to-face and discuss all the opportunities that have been presented to our organization since our last meeting. It's so helpful to be able to look at where we are and where we are going. We are thrilled with the results of the work FPWR was able to accomplish during 2006 and look forward to the upcoming year with excitement and commitment!

During the meetings, each of us reports on and seeks board input on our particular areas of responsibility. In addition, we develop a plan for the coming year to try to maximize our fundraising and efficiently use the money that we raise. It's great to be able to share our thoughts and bounce ideas off of others that we respect and with whom we enjoy working. We see time and time again that the end work product is stronger when we put our heads together and offer opinions from our various perspectives.

I'd like to go over a few of the highlights of this year's meeting so that you all will know the types of things the board worked on. (Theresa Strong has already posted the research report from the board meeting so I won't repeat that information here.)

This is a reminder of the list of our Board of Directors and the offices they hold as well as FPWR’s administrative staff.

President – Lauren Schwartz Roth, Ph.D.

Chair of the Scientific Board
– Theresa Strong, Ph.D.

– Alice Viroslav, M.D.

– Carol Craig

– Jeff Porter

At Large
– Kathryn McGhee

At Large
– Laurie Baskin

At Large –
Tom Compere

Executive Director
– Rachel W. Tugon

Business Manager
– Robert Ranieri

One of the most exciting reports was from Kathryn McGhee, our membership director. We have had an explosion of new member causing us to grow from 77 member families at the beginning of 2006 to our current total of 276 member families in 2007. We can all do the math on this and that percentage of growth is incredible! We will continue to try to expand our membership base in the coming year and will be working on expanding opportunities for members to be involved. To this end, we will be asking our members to provide information about the particular skills/experience/ talent they have that they may be willing to donate to the cause. Look for more information on this soon.

The board also discussed our current membership fee and decided that this will be converted into a suggested donation of $50 per family per year. The money donated will help offset our operating costs so that more of the dollars raised from events can go directly to supporting PWS research. Again, this is a suggested donation. If this places a hardship on your family, there is no obligation to make this donation. We will send out regular reminders of this, but no one will be removed from our list for their inability to participate in this way.

Next, we discussed how to maintain our infrastructure so that we can sustain this level of growth. Jeff Porter is in charge of our website and other technology. He reported on the continued work being done to improve and expand our website. We have gotten such wonderful feedback on the new site since it was launched in the summer of 2006 and we are thankful to be able to offer its content as a helpful tool to parents, researchers, and donors. We all agreed that enhancing our data management capabilities will be important as we move forward into the coming year.

Tom Compere, our newest member of the board, generously shared his expertise in accounting and guided us in our decisions related to non-profit financial management. He advised us in areas of budget development and government regulations, helping us stay compliant and transparent in all areas related to our fiduciary responsibilities.

The board also approved a set of Fundraising Guidelines that will soon be available to the membership. Along with the guidelines, other materials are being developed to make it easier for members to hold events. When the entire package is complete, it will be available to all FPWR members. Many thanks to Tiffany McCauley, Renay Compere, Stephanie Arnold, and Jennifer Kryzak for all of their hard work in putting this together.

We are working to develop international FPWR chapters and partnerships in various countries around the world. As these alliances are completed, we will announce them to the FPWR membership. This is a very exciting opportunity for us. We look forward to expanding our fundraising and increasing awareness of PWS around the world.

Another goal we discussed is expanding our committee structure. As the skills and talents of our membership base are identified, this list will grow and change, but at this time, our committees are as follows:

Executive Committee: Lauren Roth (chair), Alice Viroslav, Theresa Strong, Carol Craig, Jeff Porter

: Theresa Strong (chair), Lara Pullen, Todd Porter, Oneida Kincaid

Finance and Investment
: Tom Compere (chair), Jeff Porter, Robert Ranieri, Alice Viroslav, Mark Greenberg

: Jeff Porter (chair), Kari Porter, Jennifer Kryzak, Kyle Johns, Mike Peterson

Membership Development
: Kathryn McGhee (chair), Joyce Opp, Renay Compere, Lindi Kissinger, Stephanie Arnold, Tanya Johnson, Jenn Paige, Julia Larsen, Kristin Ranucci

: Laurie Baskin (chair), Stephanie Arnold, Tiffany McCauley, Renay Compere

: Alice Viroslav (chair), Tom Compere, Enid Schwartz

***The Executive Director is an ex officio (non-voting) member of all standing committees.

Because we are growing so rapidly, it’s harder for committee chairs to identify members who might want to be involved in their area, so please don’t be shy – feel free to contact members of these committees at any time if you would like to get involved–a little or a lot! You can also contact me directly and I’ll let you know how you can help out.

Our guest speaker for this meeting was Mayim Bialik, Ph.D. She discussed the preliminary results of her dissertation research at UCLA examining hormones secreted by the hypothalamus and their association with behavior in PWS. Interestingly, one area she is trying to assess is nurturant tendencies (i.e., the tendency of those with PWS to want to care for others, especially babies, small animals). We were all impressed with her longstanding interest in people with disabilities and her dedication to helping – on both a scientific and personal level. Her work is not complete at this point, but she is hoping to finish in the next year or so, and is planning on presenting her work at the Behavioral Neuroscience and International Psychoendocrinology meetings. We look forward to hearing the outcome of her studies.

These are only the highlights of the meeting. A more detailed account would have you reading this message for the next two days—we really try to get a lot done when we have to opportunity to meet together!

As a reminder, all expenses involved with attending the semi-annual board meetings are paid for by the individual board members. In addition to these meetings, monthly meetings are held via conference call. Committee meetings are held on a regular basis, also via conference call.

We all truly appreciate Renay and Tom Compere for hosting this meeting and for making the arrangements for our stay in Los Angeles. Friends of the Comperes hosted a lovely dinner for us on Saturday night and Tom's firm provided us with very comfortable meeting space for the weekend. None of us would object to returning to LA for another winter board meeting. That California weather is addictive! Thanks again to the Comperes for all of their work and trouble.

Again, it was a productive and inspiring weekend and we are looking forward
to our next meeting!

Thanks, everyone!


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