Rachel's Corner

It is hard for us as parents to think that our children are hungry. I remember thinking while living in a third-world country that one of the most terrible pains in the world would come from not having food to feed my children. Now, I know another kind of pain--the pain that comes from having a pantry full of food and still not being able to feed my child. I'd give anything to take my magic wand and make this all go away for all of us. Since that stupid wand doesn't seem to be working, I have to try other options.

There has been a lot of interest in the "protein early/carbs later" option that we have discussed. Some have asked for menu suggestions. Here are some of the foods that would work for us.

Lara Pullen and I were talking at the Kentucky walk about diet options and she mentioned something that I had heard many years ago from an old country doctor, but then added another component to it that may be crucial.

Friends,We're getting many of our loose ends tied up after the Kentucky walk and annual meeting, also trying to return to normal, whatever that is! I want to give you an overview of the walk soon, but first, a summary of the results of FPWR Month. Let me begin by saying that FPWR Month was a tremendous success! When we considered this emphasis, we knew it would require a significant amount of work over a short period of time. At that time, we had five events scheduled and were pleased with that. By the time September actually got here, we no longer had those five events-we had 10!!! Can you believe we had 10 events over about six weeks including the fifth annual Kentucky walk for FPWR and the FPWR annual meeting? It's still unbelievable to me that so many of you gave so much of yourselves to make these events happen. Let's look back at what we did during those few weeks. I'll add the event chair and an approximate amount of income with each event. Almost all of them still have donations coming in and the exact figures will be available within the next few weeks.One Small Step Walk-A-Thon (second annual)Tanya and Keegan JohnsonToronto , Canada$40,000 given to FPWRA Walk in the Park for PWS ResearchLauren RothSeattle , Washington$40,000Los Angeles Walk-A-ThonRenay CompereLos Angeles , California$22,000Philadelphia Phillies Employees Tailgating Party for FPWRMike StermelPhiladelphia , Pennsylvania$1,365Dragon Dash (second annual)Kathryn McGheeDallas , Texas$32,000Hangar Dance (second annual)Joyce Opp and Michelle ShirkLancaster , Pennsylvania$8,000California State Society Golf TournamentAmy PorterWashington , D.C.$80,000Family Fun Day at the Farm!Caitlin McLaughlinHarvard , Massachusetts$2,000Space Coast Technology Tennis TournamentCarol CraigIndian Harbor , Florida$20,000Kentucky Walk-A-Thon for FPWR (Fifth Annual)Prader-Willi Friends KentuckyLouisville , Kentucky$30,000With these initial numbers, we have over $275,000 right now. With money continuing to come in, especially from last week's Kentucky walk, we will come very close, if not exceed $300,000 during FPWR Month. HOW COOL IS THAT???Thanks to all of you who have sacrificed your time, energy, and sanity to put on these events. In addition to the money we have raised, we can't even begin to count the number of people who have become aware of PWS and FPWR. I have heard stories of families who attended events who had no idea there were support groups in their areas. I have also heard of people who attended the events who because concerned about friends or relatives with symptoms similar to PWS and who will now pass on information that could lead to a new diagnosis. What a blessing!In addition to this, we've had leaders of government, business, and civic organizations to attend these events and learn who we are and what we are doing. They are enthusiastic about going back to their circles of influence and becoming involved with us. These are the kinds of connections that will lead us into the future and maximize our effectiveness in fundraising. Thanks to all of you who made this possible. We have SO much to celebrate because of FPWR Month. You all are the best!Rachel, happy PWS mom and proud FPWR member!!!

If you want to see something impressive, take a look at this website and look who we are surrounded by. If it's true that you can tell a lot about a person by the company that is kept, we're doing pretty well.http://genomics.xprize.org/about/supporters.htmlThe X Prize Foundation is a group of committed, creative philanthropists who intend to encourage high-level thinking in order to acclerate progress in various areas. We were invited to join them when their prize in genomics was launched on October 4 and our own Jen Baffi and Adrian Connerty were there to represent us in Washington, D.C. (Thanks so much, Jen and Adrian!) The group is offering a prize of $10 million for someone who can map 100 human genomes in 10 days. We are among their 10 supporting organizations and are very proud of this relationship. Tom Compere made this connection for us and we truly appreciate this. We talked this weekend about how far we've come in the last few years. This is just another example of the remarkable progress that we have made and the path we intend to follow into the future. Hang on to your hats, friends. We're really taking off!!!

Just to refresh everybody's memory, Amy Porter's golf event in Washington, D.C. is sponsored/underwrit ten by the California State Society. Amy and the event planner felt that it would be great to have a California family w/a child w/PWS represented at the event so Renay is flying from LA to DC w/William to be there. Remember, too, that Renay just finished coordinating the first FPWR walk-a-thon in Los Angeles AND she's getting ready to bring her family to Kentucky for the KY walk and annual meeting next week. That takes a LOT of energy, time, and sacrifice from the whole family! Renay's work shows the kind of spirit that has gotten FPWR to the place where we are. We are, without a doubt, the driving force behind PWS research! Thanks to people like Renay who go the extra mile again and again, we will do exactly what we set out to do--change the future for our children with PWS!Thanks again, Renay, and everybody for all that you are doing. What a blessing to be a part of this group!Rachel

You all, We have an incredible weekend coming up and just thinking of it gives me goose bumps. From Philadelphia, Pennsylvania, we have the terrific Tailgate Party. From Dallas, Texas, we have the mighty Dragon Dash. From Lancaster, Pennsylvania, we have the groovy Hangar Dance. From Washington, D.C., we have the cool California State Society's Golf Tournament. All four events on the same weekend. Be still my heart!I think I've finally found words to describe it.....(drum roll, please)..... ..THE PERFECT STORM!!!!Do you remember the George Clooney's (yet another handsome Kentucky boy) movie where three powerful storms converged on a single point and poor George and his crew were right in the middle of it. That's is what this weekend feels like, except we have FOUR.!!!! Now, to be clear, my comparison is with the combined force of the storms and not how everybody on the boat perished and the captain went down with the ship. We can skip that part! Let's focus on the storms.Four strong forces....all converging on one point....all at the same time. These four events, all converging on the world of PWS research, and all this weekend. Each event is a force in its own right, but combining their strengths gives us energy the likes of which we've never seen. I CAN'T WAIT!!!!!!Thanks to all of you involved in these four events. Mike and friends in Philadelphia, you all will knock it our of the park this weekend. Kathryn, Erica, Lindi, Amy, and everybody else in Texas, hats off to you all as you go into your second year of Dragon Dashing. Joyce, Michelle and everybody in Pennsylvania, the very best to you all up there who will be cutting the rug at the Hangar Dance into the wee morning hours for the second year in a row. Amy, Jeff, Kari and everybody who is helping with the first annual DC Golf Tournament, this event is already a hole-in-one, a real class act! We're all sending you our prayers, thoughts, positive energy and anything else we can find! We're all with you in spirit and will be waiting anxiously for your reports. Have a great weekend and thanks, thanks, thanks!!!Rachel

FPWR Month is in full swing and we have events all of the place! Be sure to check the blue events box on the front page of the website frequently to see what events are coming up. www.fpwr.org And speaking of events coming up, the Kentucky walk will be less than three weeks from now! Jeff has set up online registration for the annual meeting weekend so if you haven't already, take a minute to check this out. http://www.fpwr. org/event/ 2006Conference/ registerIf you choose, you can always register and pay your fees when you get to the hotel, but if you'd rather go ahead and check one more thing off of your "to do" list, here's your chance! When I read over the list of families coming together for this weekend, I can hardly wait for the time to pass. Be forewared that we in Prader-Willi Friends Kentucky are notorious for our attempts at trying to keep as many families here as long as possible. We'll be trying to get you to come earlier and stay later, or just move her to stay! Just thought you should be warned... :)If you have any questions or if there is anything you want to talk to me about, please let me know. We'll be waiting here for you all and if you're late, we'll leave the porch light on!See you soon!Rachel

We are right in the middle of FPWR month and things are going even better than we could have predicted. We have had great success with our first walk in Seattle bringing in $32,000, the second annual walk in Ontario, Canada that brought in $40,000, and our first walk in Los Angeles that netted over $20,000!!!The good news is that this is just the beginning! For information about events during the last two weeks of September in Texas, Pennsylvania (2 events), Washington, D.C., Florida, Massachusettes, and Kentucky, check our website at www.fpwr.org. You can click on any of the events on the front page and it will take you to details of the event and contact information for the organizers, as well as a map to the event location.The proceeds from these events go to support PWS research through the Foundation for Prader-Willi Research. For a list of research projects that we have funded up to now, please go to http://www.fpwr. org/research/ grants/summary If you have any questions about the events or FPWR, please contact us at info@fpwr.org . Thank you for your support and participation in the events of FPWR month as well as any of our other events throughout the year. FPWR is growing rapidly and as we grow, we increase our ability accelerate the pace of PWS research. We are very thankful for the families who have given sacrificially of their time and energy to hold events and raise these much needed funds. We are also thankful for all of you who have supported these efforts through volunteering, donations, attendance, and your prayers.We hope to see many of you at the events of FPWR month!Rachel

A friend sent this today. It shows a line of little girls holding hands facing the immensity of ocean waves. Alone they might be washed away, but together they stand strong, as do we in FPWR. Bring on the waves!