For your convenience, we have created a "Conference Information and Resource Packet". Click the link below for the most current conference information and resources including rates, child care information and your "Personal Conference Budget Worksheet".
"Conference Information and Resource Packet"DO YOU HAVE A SKILL THAT WILL HELP THE FOUNDATION?
The Foundation is looking for some enthusiastic and energetic people who want to be a part of mapping the future of our growing, family-focused organization. Our organization values a free flow of ideas from a diverse group of volunteers. Big thinking and an attention to details is what sparked the creation of our Foundation 16 years ago and we want to keep that initiative going for the next 16 years and beyond.
Do you or someone you know - a family member, a friend, a co-worker -- have experience in marketing, communications, fund raising, conference planning or accounting? We'd love to hear from you. If you don't have expertise in those areas but still want to join our team, there are lots of other areas where our Foundation needs help.
If you or someone you know are interested we have a role for you, from volunteer on a specific project to committee appointments to even a seat on the Board of Directors. If you'd like more information before making your decision, please contact Executive Director Barb Cruz at
[email protected] or Board President Sue Lomas at
[email protected].
Conference communications, Newsletters, and Research Updates are all benefits of being a member of the Foundation. It's important to remember that this new database will become the NEW SOURCE for communications from the Foundation. Families should be made aware that they must update their information with the Foundation in order to keep receiving these communications from the Foundation.
Regardless of how long you have been a member of PMSF, we urge you to update your membership contact information as soon as possible. Please feel free to contact
[email protected] or call the foundation at (941)-485-8000 with any questions.
REGISTRY INSIGHT
By: The PMS International Registry Coordinators
Has your child recently received a diagnosis for a new medical condition? Perhaps your child has been diagnosed with gastroesophageal reflux (GERD) or irritable bowel disease? Maybe your child has starting walking or reached puberty? So many individuals with PMS undergo medical changes and may become diagnosed with a new condition(s). In order to help the PMS International Registry better serve our community, we ask that you take a moment to update your child's registry profile. If you don't have the spare time, we ask that you log in and find the specific section in the clinical and/or developmental questionnaire applicable to your child's health change and update that section. This new and updated piece of information will help the registry maintain better accuracy of the PMS population for interested researchers, especially those studying very specific conditions (i.e., GI related diseases, epilepsy, lymphedema, etc.).
By doing this, you will be empowering doctors and medical professionals, the research community and most of all you will be empowering yourself. To update your child's registry profile, please log on at
www.pmsiregistry.org
Logan's Heroes 4th Annual Cruise for 22q
By: Debbie LeClaire God shined upon us again with a beautiful day. We had about 145 motorcycles for the ride and nearly 360 people attending this year for the 4th annual Logan's Heroes Cruise for 22q. It was another awesome turnout. Making a special guest appearance this year was Dr. Katy Phelan, which was wonderful. Thank you, Dr. Phelan!!
We also had 7 PMS families showing their support! Jacob Assendelft's family , Logan LeClaire's Family, Elizabeth Thibo's family, Garrett Cowdry's family, Catie Currell's family, Eve Howie's family and Kairi Norris' family along with the head of our PMS family, Dr. Phelan - how awesome was that?
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| Logan's Heroes |
We could not have had another successful year without the help of our family and friends, especially the Thibos and Assendelft's. Our family and friends deserve all the credit, along with Pam and Jason from Red Lobster for the additional help with the Red Lobster Charity Golf outing, which was the "kick start" to Logan's Heroes Cruise for 22q. The people and businesses that attend and donate to Logan's Heroes are the best!
Check out the pictures and video along with ABC12's interview with Mike LeClaire, Nick Assendelft and Dr. Phelan. Visit:
www.logans-heroes.org.
Shout Out.
It's time again to give a "Shout Out" for your PMS child in the new 2014 PMSF Calendar. Please send your order for the "Shout Out" by mail to PMSF, 200 Capri Isles Blvd., Suite 7F, Venice FL 34292 or by visiting our website, www.PMSF.org and use the DONATE link. You may indicate on the form you are purchasing a "Shout Out" and we'll take it from there. The fee is the same as 2013, $20.00 (US dollars) for each "Shout Out".
Most Important!
Please send your photo to
[email protected] and include the first and last name of your child and the country or state where your child lives. The photo should be of the child only, please.
Deadline is Halloween, October 31, 2013
your colleagues at work or children at school or nursery to wear jeans and make a donation. You can sign up for a free fundraising pack at