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If we can take PWS to the White House ...
A message from FPWR Executive Director, Keegan Johnson
What a start to 2013!  If we can take PWS to the White House ... what else can we accomplish?  
Taking PWS to the White House was the culmination of a community wide effort.  Not only did we have families voting from around the world, each family had their friends, co-workers and schools voting as well.  We beat groups that had entire universities and cities the size of Chicago voting against us.  Your hard work made this happen and your hard work is allowing us to take our community to the next level.  
By attending the Let's Move Event at the White House we were able to:
  • Dramatically, increase PWS awareness (over 3 million people heard about PWS through the media coverage of the event),
  • Develop important relationships with health related government agencies (e.g., USDA), members of congress and numerous non government groups fighting against obesity, and
  • Set the table for future initiatives as we were invited back to talk with the USDA, HHS, CDC and the Presidents Council on Fitness, Sport and Nutrition
More importantly this event proved that we can accomplish what we focus on as a community.  PWS is rare and it would be very easy to say we could never take PWS to the White House ... but we did.  We now know we can accomplish our goals if we focus and work together.  What's next?  
  • Build a Global PWS Registry
  • Perform PWS clinical trials
  • Eliminate the challenges of PWS.  
It will take a lot of work, but we've proven it is never a good idea to bet against our PWS community!
Despite a storm that delayed the Let's Move event and closed many government offices, our families braved the cold and wet weather in D.C to "Hike the Hill"  and establish rapport with their local representatives.  

"Our goal was twofold: to raise awareness about Prader-Willi Syndrome as it relates to childhood obesity and establish relationships with those in Washington, DC.  I believe we did that.   We are very excited to go back in 2014 to continue to build on what we started." -- Joe Olivacz
Left:  Lisa and George Varndell, Lon and Max Seidlitz and Joe and Cindy Olivacz meet with their Maryland Representative George Delaney during our "Hike the Hill" event March 6th. Right:  Little Sienna Schoenberger proves its never too early to meet with your congressman's office! Give me 5 Sienna!

Ask the Expert: Our endocrinologist suggested trying Ritalin type drugs to help curb our child's appetitive. Do these work?

Response from Dr. Miller: In some children with PWS, stimulant medications will decrease appetite.  They do not work in everyone and not everyone has the same response to the same medication.  It is important to note that many of these medications can cause significant side effects in individuals with PWS, including tics, stuttering, increased skin-picking or self-mutilatory behavior, and increased anxiety, so the risks and benefits need to be weighed when deciding whether or not to try these type of medications for your child.

Jennifer Miller, M.D. is a pediatric endocrinologist at the University of Florida.  Her focus has been on investigating the effects of growth hormone treatment on brain development, sleep, and appetite in individuals with PWS; investigating the effects of early-onset weight gain on brain development; and studying the sleep abnormalities in individuals with PWS. At their clinic in Florida, Dr. Miller and Dr. Driscoll have seen and are following hundreds of individuals with PWS. They provide ongoing advice to their families on the most effective and newest management strategies and treatments for handling PWS.   
Breaking Boundaries
by Dana Capobianco

I spoke to a friend this morning that has a daughter with a rare genetic condition.  Her condition only affects 600 people worldwide. A mere fraction of our already small Prader-Willi community.  We were speaking about the various things that we have been involved in as parents of a child with special needs.  Things that we’ve attended, things that we’ve done to raise awareness, things that we’ve done to advocate for them, ways that we’ve fundraised.  As we talked, I told my friend about the incredible experience that I had in Philadelphia at the last FPWR research conference.  I told her about the amazing people that I met.  How they became friends.  More than friends even, but some sort of extended family that I reached out to on a daily basis for advice, or empathy, or knowledge.  I told her about the brilliant researchers that spoke and how much I learned from them, and how inspired and excited I found myself after their talks.  I told her about the doctors that I met.  The very best in the field.  I told her how deeply I am looking forward to going to San Antonio to learn more, and laugh more with people that know exactly what I am going through because they’re going through the very same thing.

Before we hung up my friend told me that she was going to contact her foundation’s president right away to see about them having a conference because ours sounded so wonderful.  I urged her to, and told her it would be the experience of a lifetime.  It would make her feel inspired, excited, in control, and not alone.  

On July 12 – 14, 2013, parents, grandparents, aunt, uncles, and caregivers will convene in San Antonio, Texas for FPWR’s next annual conference, Breaking Boundaries.  I urge you to take advantage of the fact that our community is large enough, and strong enough to put on a conference like this.  A place for parents to come together and learn, and form lifelong friendships.  I assure you that this weekend will change your life, and your child’s life for the better. Watch this video to see why an FPWR conference is not to be missed!

Visit to register, and for further details.  
Would you like the chance to win a trip to San Antonio July 12-14 for our Annual Research Conference?  Raise $1000 for FPWR and you will be entered to win a trip to our Conference which includes airfare, free registration and hotel accommodations for the weekend!
It All Begins with One SMALL Step!
by Ali Shenk

It is an exciting year for One SMALL Step as we now have 57 events registered for 2013! This includes new locations in 5 new states: Arizona, Illinois, Missouri, Florida and Colorado as well as in Hong Kong!

Our first event has yet to take place and we have already raised over $100,000.  This is pretty incredible seeing as the year has just begun!  With the support of the Prader-Willi community, we know we will meet our goal of $1.3 million for Prader-Willi Research!  Want to see how your One SMALL Step dollars are being used? Click here for details

Have you seen the map we created on Google Maps (see image right) showing the One SMALL Step walk locations?  Its a great visual to see how we have expanded across North America and the globe! Tanya Johnson  remembers when it was just one little pin up in Canada, and now look at all the pins on our map! See a gap? Ask Susan Hedstrom how you can fill it! Joe & Cyndi Olivacz did just that, as they saw a gap in Florida and decided to host a walk there – and they don’t even live in Florida! Way to step it up!

Scotiabank is returning as our Canadian title sponsor! Thanks to Linsey Grover, ICON Clinical Research has chosen FPWR as their charity and donated $10K this year! We are always on the lookout for more sponsors at all donation levels.  If you have a potential contact, please feel free to let us know! 


PWS Research Update - Mining a New Experimental Approach to Therapeutics for PWS
By Jessica Bohonowich

In a recent email correspondence, Dr. Cunningham at the University of Texas Medical Branch thanked FPWR and described the contribution that FPWR grant funds (2010-2011) have had on the work coming out of her laboratory. She writes, "thank you for the support which allowed us to build an entirely new program to develop therapeutics for those affected by PWS...We have made incredible progress on this research program, thanks in great part for the support from the FPWR.
Dr. Cunningham’s FWPR funded project "The 5-HT2CR: Mining a new experimental approach to therapeutics for Prader-Willi syndrome can be found here. The goal of this work is to develop a novel class of drugs that can influence the serotonin system, specifically the serotonin 2C receptor, which has been reported as having abnormal expression in PWS. Results from this work were recently published in the Journal of Neuroscience and were highlighted by the website Medical News Today.

Serotonin is a neurotransmitter (messenger in the nervous system) that plays a critical role in regulating a wide range of behavior including satiety and mood. Serotonin works by binding to the serotonin receptor on the cell surface which then relays the appropriate message to the cell. Decreased signaling of the serotonin pathway has been linked to both abnormal appetite and depression. Considering the reported disruption in serotonin signaling in PWS, there is great interest in exploring ways to boost this pathway.

Common approaches include increasing the amount of serotonin and/or serotonin receptors. However, Dr. Cunningham’s group is taking an outside the box approach by looking at what other proteins interact with the serotonin receptor and affect its function. This is based on the notion that receptors don’t function in isolation and that complex interactions with other proteins can amplify or dampen their signaling. In the case of the serotonin receptor, once such protein is PTEN.

In more simple terms, imagine wanting to get the maximum brightness (serotonin signaling) in a room (brain or gut). One approach is to add more lamps (serotonin receptors). A second approach is to make sure that all of the lamps are filled with working light bulbs (serotonin). However, a third and complementary approach is to make sure that nothing is blocking the light (signal) by removing anything that might dampen the brightness, for example, a dark or dusty lampshade (PTEN).

In order to disrupt the interaction between the serotonin receptor and PTEN, Dr. Cunningham’s group designed a peptide (small protein fragment) based on the part of the receptor where PTEN interacts. This “tricks” PTEN into binding the peptide fragment instead of the full length functioning serotonin receptor, effectively removing the lamp shade and increasing the strength of the signal.

Moving forward, studies will entail designing more potent peptides with minimal side effects as well as examining the functional effects of these peptides on behavior. We look forward to learning about the continued work as Dr. Cunningham’s group continues to move towards the long-term goals of preclinical (animal) models and a potential therapeutic for serotonin mediated disorders.

Cunningham et al, The Journal of Neuroscience, 23 January 2013, 33(4): 1615-1630; doi: 10.1523/​JNEUROSCI.2656-12.2013
Update on grant awards
Award details are being finalized for the end of 2012 grant cycle and the new grant recipients will be announced on the FPWR website as well as in the next newsletter. We are delighted to be funding exciting new projects in the FPWR general grant program. General grants cover a range of topics including genetics, PWS models and clinical studies. There are also a number of grants this cycle focused on mental health research being supported by the PWS community-wide funding platform, One SMALL Step. The next targeted area of emphasis is hyperphagia research, with grants due March 29th, 2013. These "Best Idea Grants" are expected to represent some exciting ideas from the recent Second International Hyperphagia Conference ( which was organized and sponsored by the Prader-Willi Syndrome Association (USA) and co-sponsored by FPWR. 

PWS People - Jennifer Bender
By Yinna Ng

Whether you’ve just recently received your child’s diagnosis of PWS or not, we can all agree those first moments are devastating and overwhelming. We’ve all been in that moment where we just wanted to stay in bed and cry all day and Jen Bender wasn’t excluded from this. About two years ago, when she received Leah’s diagnosis, she was equally overwhelmed, devastated--especially being in all the general forums where parents of older children were discussing their children’s current stages of development. She was completely overwhelmed with problems she may or may not encounter years down the line.

Jen decided to create a safe haven, where parents of infants and toddlers ages 0-2 years would be able to discuss their current stages of issues and developments in a private Facebook forum.  Here, parents who have received a new diagnosis are able to receive the support they need without bearing on the weight of all the symptoms of PWS that are scattered on such a spectrum.  Parents can connect with other parents of children with similar ages and share their PWS concerns and feats privately among their peers.  This safe haven has been a major support system and has provided peace of mind for many parents dealing with the early stages of PWS. 

Jen's involvement in the PWS community isn’t purely on social media.  She has volunteered at  several FPWR events including the FPWR research conference and proudly holds the title of Vice President of the Prader-Willi Syndrome Association of the Pennsylvania Chapter.  She is also the Chair of our New Parents Committee, which is currently developing a hopeful and informative new parent packate to send out to parents of newly-diagnosed children.  Her goal is to help families eliminate worry and heartache through support and education.

In addition to her involvement with PWS organizations, Jen has also hosted a wide variety of fundraisers for PWS.  She has held Thirty-One parties, a Chinese auction, Dine to Donate functions, a miniature golf outing, airline ticket raffling, and she also hosted a One Small Step walk last year.  Her One Small Step walk, alone, raised an impressive amount of $43,000!! 

It goes without saying that  Jen Bender is obviously a mom that would go above and beyond for her daughter, but she is also someone who channels all her grief and heartache into doing everything she can to make sure families can avoid those feelings.   She highlights the greatest thing about this organization: FPWR is an organization made up of people who care to make a difference, people who know that the future is what we make of it. On behalf of all the newly-diagnosed families, thank you, Jen for making the first years so much easier than it would have been!

New Parent Package Unveiled…
by Megan Catalfamo
Taking those first steps into the world of Prader-Willi Syndrome can be daunting and overwhelming for parents of newly diagnosed kids. “What is PWS? How do we treat it? What should we do next?” Sharing the hindsight of their own families’ experiences and advice of medical professionals, FPWR’s New Parent Committee has created a program to provide information and support to families who are just beginning their PWS journey.
One major component of the program, the First Steps New Parent Package, includes:
  • Basic facts about PWS
  • Descriptions of therapies and treatments
  • Suggested first and next steps
  • Advice and perspectives from PWS families
  • FPWR’s research initiatives, conferences and volunteer programs
  • A list of other helpful resources
“First Steps was written by parents for parents. It is a way to share the gift of hindsight: what we wish we’d known when we first received our child’s diagnosis, or what we did learn that was so very valuable and helpful as we began the Prader-Willi journey with our own families… Our hope is that First Steps will help connect you to resources, alleviate some of your fears about your child’s future, and empower you as you coordinate care for your child.” 
To receive your copy, complete this form or send an email with your name, phone number and address to: 

Make Your Mark!!
By Amber Rector

The FPWR community is stepping out in some new ways to show support for research and 2013 boasts several new fundraisers that are sure to be memorable!

If you find yourself on the West Coast this April 27th, be sure to get some tickets to the Prader-Willi Angels Gala. Hosted by the Kowal family, this event brought in $40,000 last year! They pull their inspiration for this annual event from their 2 year old daughter Caitlin. This year is sure to do better with an evening of beach views and delicious dining and wine. The auction will host items such as VIP Dancing With the Stars tickets, a Resort Spa stay in Belize, and much much more! Tickets are $150 a person, for more information you can visit

If dining and wine aren't your thing, how about beer and a movie? The Rector family in Columbus, OH will be hosting a fundraiser at a local movie theater/drafthouse. This will be the first year for this event but they are hopeful it will bring funds and awareness for PWS and their 2 year old daughter Jae. The admission is $12 a person and all of the money taken at the door will go directly to FPWR.

On July 13th, the Schoenberger family will be hosting their first Savor the Sip fundraiser at a winery in Pennsylvania and a committee of families are planning a NYC Gala for this November!  More details on these amazing events will follow!

This is just a sampling of the many ways YOU can become involved in raising money for research. It is so simple. You can host a walk, big or small, whatever your comfort level. You can host an all-star gala and dress to the nines. You can host a few friends over for a "Lunch and Learn". It really is about just getting the information out there and getting the support coming in. If it is big enough to be a thought in your head, it is big enough to become a reality. If you are interested in hosting an event of any type, but aren't sure what the next step is please contact Susan Hedstrom at

Don't miss our annual gala and conference in Toronto, Ontario!

The weekend begins with the annual Gala Friday, April 19th.  Enjoy a full three course meal, open bar and dancing! Gala tickets and details are available at

Its not to late to register for the FPWR Canada Conference: 
A.C.T. (Action, Collaboration and Treatments for PWS). The conference, April 20 - 21st presents many of the best PWS researchers in the world! Click here to register today!
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