Part of TeamPWCF 2017

2017 Long Beach Marathon Event
October 6 – 8, 2017

It was a beautiful race weekend, and a weekend filled with raising awareness.  Representing 15 loved ones who have Prader-Willi syndrome, TeamPWCF had almost 60 people participate in races over last weekend, included 4 who have Prader-Willi syndrome.  TeamPWCF also raised over $9,000 in donations; our top fundraisers were:

  • The Casey Family – $3380
  • Jennifer & James Meade – $1025

On Friday, PWCF’s Office Manager, Shannon Jacobson and Director of Education & Training, Emily Dame set up our Expo booth before 11 to be ready for the noon opening and worked the first few hours until Board Members Julie Casey and Daniela Rubin, Ph.D, relieved them and continued to work the booth until closing.

The Casey Family – Marathon Committee Chair, Julie Casey, husband Dan and son Ryan, rose early on Saturday to set up the PWCF booth at the Aquarium of the Pacific 5K Finish Line festival by 5:30 AM.  TeamPWCF had almost 50 people who ran or walked the 5K on Saturday, including those registered through TeamPWCF and some additional family members who registered after our charity slots were full.  PWCF’s Executive Director, Harriet Edwards and TeamPWCF Half Marathon participant Gail Dong watched the booth while the 5K participants were on the course.  After the 5K was over families had a chance to visit a little, including two new families who had never been to a PWS event before; we were able to provide them with some additional information and get them connected to PWCF. TeamPWCF also included 2 members who have no connection to PWS, but found our charity team (one through the marathon registration process and one through our Facebook event page) and decided to run on our behalf; so a special thank you to Julie Curtin and Johannes Saigyouji who now have a greater understanding of PWS and connection to our community.

For a couple hours on Saturday we had both the Finish Line Festival booth and the Expo booth running concurrently.  While Harriet, Julie and Board Member Jennifer Wolkensdorfer worked the Finish Line Festival, Board Member Whitney Bras, her sister-in-law Andrea Bras, and niece Kasen Bras opened up the Expo Booth for the day.  After closing down the Finish Line Festival booth, Harriet and Julie relieved the Bras ladies at the Expo.  Board Member Rodney Dong helped for the last few hours of the day, and assisted with tearing down the booth and helped Julie take stuff over for Sunday’s Marathon Finish Line Festival.

During the two days of the Expo, we talked to hundreds of people about Prader-Willi syndrome as we passed out wrist-bands, flashlight lanyards, hand sanitizer and temporary tattoos, each branded with our website.  Included in the hundreds of people we spoke to about PWS, we talked to assorted medical professionals: emergency room doctors, NICU nurses, a respiratory therapist, nurses, doctors, speech therapists, and a genetic counselor.  We also talked to school counselors, special education teachers, and teachers from preschool to high school. Many of the people, but particularly the medical and educational professionals were extremely grateful the information.  Visitors to the booth told us that they had noticed our TeamPWCF shirts on the 5K course and wanted to find out more, and some visitors told us they remembered us from last year.  It is this continued presence that will help us toward our vision of A Full Life Without Limits as we elevate the public consciousness about Prader-Willi syndrome and the work of Prader-Willi California Foundation.

On Sunday, Marathon Committee chair Julie Casey was up early again to set up the Finish Line Festival Booth by 6:00 AM.  Executive Director Harriet Edwards joined her and the two of them passed out 600 granola bars attached to information cards to race finishers.  Board Member Rodney Dong, who due to an injury was unable to run the marathon as planned, helped capture photos of TeamPWCF runners as they raced by.  We had 1 Marathon runner and 7 Half Marathon runners on Sunday.

In addition to the in-person awareness all weekend long, we also had an ad in a virtual bag that was sent to ALL event participants – over 20,000 people.

Thanks to all of TeamPWCF who participated and helped us with one of our pillar focuses – raising awareness!

Our 5K team members:

Bernard Amarasekera | Hasmukh Amarasekera | Lauren Amarasekera | Kasen Bras | Whitney Bras | Dan Casey |
Julie Casey | Ryan Casey | Joanna Castro | Rafael Corona | Julie Curtin | Kiran Dong | Jesse Elizalde |
Monica Elizalde | Susie Fallon |Margaret Gannon | Megan Gannon | Paul Gannon | Terry Gannon |
Nicole Herman |Brendon Kelly | Cyndie Kelly | Tony Kelly | Brendan Loughnane | Patricia Martinez |
James Meade | Jennifer Meade | Siria Mercardo | David Monaghan | Kimberlee Morgan |
Samantha Morgan | Jeremy Ngugi | Maria Ngugi | Melanie Ngugi | Carlos Rodriguez | Ruby Rodriguez |
Johannes Saigyouji | Christopher Santoyo | David Spellman | Francisco Tejede | Jessica Tejede |
Leah Tejede | Jennifer Wolkensdorfer

Our Half Marathon Participants:

Amberly Bark | Ashley Bark | Carol Bark | Gail Dong |
Kimberlee Morgan | Maria Ngugi | Matthew Taylor

Our Full Marathon Participants:

Rodney Dong | James Ngugi


Photos of the weekend can be found here