PMSF's 2014 Family Conference
By Vicki Camarillo & Alan Schroeder
Conference Planning Committee, co-chairs
Our 2014 PMSF Biennial Family Conference is just a year away so time to start planning.
This event is the largest in the world for those affected by P-MS. It is an opportunity for families to come together and learn more about the medical and genetic aspects of the Syndrome, discuss problems and solutions, and offer support and friendships. Many of our families think of this as a "family reunion" more than a conference.
Held at the beautiful Caribe Royale All Suite Hotel and Convention Center in Orlando, Florida, this event will be July 23-26, 2014. The conference center is onsite and the hotel accommodations consist of 1 bedroom suites and 2 bedroom/2 bath villas. Both offer many of the conveniences of home and are great for our families. The one bedroom suites are $129 per night and the 2 bedroom villas are $179 per night (plus tax). Reservation links will be posted on our website later this year.
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| Caribe Royale |
If this is your first time attending a conference, we encourage you to arrive in time to attend our New Family Orientation on Wednesday, July 23 in the afternoon. We will have a "meet and greet" Wednesday night for everyone to catch up with old friends and make new ones.
Conference sessions will run all day Thursday, Friday and Saturday (July 24, 25 and 26).
There are lots of attractions in the Orlando area so we encourage you to add extra days to your trip to enjoy these attractions.
Addi's Angel's
By Melissa Marlow
The Marlow family is pleased to report that their "Addi's Angels Escorted Motorcycle Ride" fundraising event was a complete success. Dr. Katy Phelan was in attendance as this once rescheduled event raised over $3000 to benefit PMSF with a $500 donation coming from event sponsor Kohl's Department Store.
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| Hitting the open road with Dr. Katy. |
On Saturday June 15
th, participants departed from "Corn Dawgs" fairgrounds in Loganville, GA. for a leisurely country motorcycle ride and arrived back to an event that offered something for every member of the family. Rides for the kids, food vendors, raffles, and a silent auction were highlighted by a performance
by David Gardner & The Heart N Soul Band.
The Marlow's would like to thank everyone who generously gave their time, talent and resources to make this event successful. All proceeds from this event are on behalf of Addison Marlow and benefit our foundation.
To enjoy more pictures of the event click...Addi's Angels Pictures
5th Annual Sammy's Run 2013
by Sammy's Aunt Debbie (Deb Graham)
Planning, preparing and promoting Sammy's Run every year is an enormous task that is cheerfully taken on by many volunteers from Oak Park School and the Phelan-McDermid Syndrome Foundation. It is a work of love.
Several PMS families, track club members, school kids (what a great legacy that the teachers/parents are sharing with their students/kids - to give back and to be healthy!) and the community come together for Sammy's Run. One only needs to attend Sammy's Run once to notice the difference.
So how does this race improve year after year to serve over 1000 participants? The volunteers come together with a vibrant and heart warming welcome to all - kind of like we are all joined together to share in the joy of life! It is noticeably unique as the runners come in all ages, sizes, shapes and abilities, but wonderfully accepted and encouraged to participate in the walk, run or fun run for the younger set.
There are trophies, treats, lots of food (thanks to a number of sponsors), raffles, ribbons, and celebrating! Sharing the vision behind Sammy's Run is my favorite part. Yes, the event is supposed to raise money for Oak Park and the PMS Foundation, but it is so much more than that ... it is a realization that everyone no matter what they are able to do or not do is valued and respected.
And yes my very favorite part is the finish line and all the cheering ... it is magical, emotional and totally worth the price of a t-shirt (a really cool t-shirt!) to see the smiles and hear the laughter of all the runners!
One more thing, Sammy's Run is always just plain fun!
To see some great photos, please go to www.sammysrun.com and to read a review of the event, click the ... Manasota Track Club's July newsletter (page 12)
Registry Insight
By: The PMS International Registry Coordinators
Most of our families live in a climate where the hot summer months are in effect. A common finding among individuals with PMS (based on reports from parents) is the inability/limited ability to regulate body temperature and/or sweat. Since body temperature regulation and sweating are essential for the human body to naturally cool itself, it is very important for our children to take precautions when the weather is hot.
According to the PMS International Registry, of the 419 respondents, 36% have reported that their child overheats easily, just over 20% perspire less than typical and 14% do not perspire at all. To learn more about this topic or to update your registry profile, please log on to the registry at http://www.pmsiregistry.org
Remember to keep your child cool by hydrating often, provide plenty of shade and remain in air conditioning when possible. For other tips on how to have a safe, fun and cool summer, please click here... SafeSummer Bulletin
Coming Events...
The 4
th Annual Annie's Golf Classic will be held on September 23, 2013 at a private country club in the Dallas-Ft. Worth area. The golf tournament is organized by Richard and Veronica Frunzi and will benefit Phelan-McDermid Syndrome Foundation and local children's charities. For more information on this event, visit
www.anniesgolfclassic.com. PMSF families in the DFW area are welcome; contact Veronica Frunzi at
[email protected] to find out how you can help make this fundraiser a success.
Of course, you can also reach out to Veronica if you have some interest in replicating this fun and successful event in your area.
