.............................(click on the image above for more info) ................................                         ................(click on the image above for more info)

.............................................."An International Alliance of Support and Science"


Foundation unveils new logo that represents

our worldwide communities of influence


By Nick Assendelft

Vice-president, Board of Directors


In the 12 years the Phelan-McDermid Syndrome Foundation has been in existence, we’ve evolved quite a bit.


We’ve expanded worldwide. We’ve teamed up with key researchers. We’ve increased our focus on families. Back then, at our first support group meeting, there were just a few countries represented. Today, you’ll find in 43 countries families affected by PMS.


To reflect our growing influence and international reach, we are unveiling a new logo today that embraces all of the communities we serve.


"We are a strong community of families and professionals. Our strength lies in our commitment and collaboration for one purpose; to help our kids. We wanted to reflect that partnership in our new logo," said Susan Lomas, President of the Phelan-McDermid Syndrome Foundation Board of Directors.


When a small group of families first hatched the idea of a support group, research into PMS was in its infancy. Our futures were linked by the smallest of chromosomes. Since then, the science behind PMS has accelerated.


That's why the Board of Directors wanted a unique image that is inclusive of the genetic diversity found in our community of diagnosed individuals. Research has shown that deletions -- a broken chromosome -- are not the only cause of PMS. We know mutations can also cause the syndrome.  Families with PMS not caused by a deletion -- a growing group -- need a home, too, where they feel welcomed and included. As research progresses, we believe groundbreaking findings will grow the circle of families who will feel at home among us.


The Foundation’s core values are community and inclusion. We wanted a logo that encompasses everyone -- families, researchers, donors and caregivers among them -- who is involved in making a better life for those diagnosed with PMS. We have a wider network of supporters with whom we work every day.


We wanted to show how we all individually come together in a global community – in a group hug, if you will -- for a common cause.


“I love the new PMSF logo. It is creative and inclusive -- it includes those with chromosome deletions as well as those with ring chromosomes, other structural rearrangement, and mutations,” said Dr. Katy Phelan, whose groundbreaking research paved the way for the creation of the Foundation. “It also signifies the community of parents, caregivers, doctors, researchers, etc, who impact the lives of individuals with PMS -- very thoughtful.”


For nearly a year we debated the issue and the values we wanted to portray. We feel our new logo broadens our appeal, but still is reminiscent of our roots. It’s an evolutionary, not a revolutionary, change.


"Our Foundation has experienced tremendous growth in the past few years on many levels and this new logo reflects our commitment to bringing all PMSF stakeholders together to make a difference in the lives of those affected by this rare syndrome," said Barbara Cruz, Executive Director of the Phelan-McDermid Syndrome Foundation.


The Board of Directors hopes you join us in embracing the new public image of the Phelan-McDermid Syndrome Foundation. As always, we want to hear what you think. Let us know by sending an e-mail to This e-mail address is being protected from spambots. You need JavaScript enabled to view it .


The Board would like to thank Troy Scillian, dad to Mason, for his work designing the logo.


FAQs: Breaking down the reasons behind our new logo

Why are we changing?


As our group grows we wanted a logo that embraces all aspects of what we represent. We have many individuals that make up our community – families foremost, but also donors, researchers, medical experts, and caregivers, to name a few -- and the Board of Directors felt they all needed to be included in our circle of influence.


Why make the switch now?


The change was driven by our continuing work in revamping our Web site. But, we are so excited about our new logo that we didn’t want to wait to show it to our families. Plus, with the international conference this month, it was the perfect time to demonstrate our commitment to bringing our global community together.


We’re international?


We have known cases of PMS in 43 countries, with the United States still by far the country with the most cases. Not only have we seen a growth in the number of countries represented, but we’ve also seen a growing interest by international families to form associations. Our Global Partnership plan brings them all into our circle of friends and we are working with PMS associations in other countries. A number of them will use our new logo as part of their identity.


What happened to the chromosome?


The chromosome is still what ties us together, but we feel our community is made up of so much more. Not all the causes of PMS are full deletions. Microdeletions, mutations and damage to the SHANK3 gene on Chromosome 22 are all associated with PMS. We don’t know where science will take us. We want to let everyone know the Foundation is more than a chromosome. It is families around the world, researchers around the world, doctors around the world and donors around the world. The chromosome unites our families. The Foundation unites our communities. We’re inclusive of the many people around the world who are touched by PMS.


Are we downplaying science and research?


Not at all. As a matter of fact the Foundation is making an unprecedented commitment to science and research into PMS. We have scheduled an international scientific symposium in Washington in November. We are one of 17 groups to win a contract with PCORI to expand our international registry over the next 18 months, allowing for the collection of even more data about those diagnosed with PMS. And we are participating in a number of ongoing studies, namely one in conjunction with Stanford University.


What is the message behind the logo?


We see our new logo as a welcoming group hug, a community that shows support for one another and strength in our togetherness. The individuals represented in our logo are families, donors, researchers, caregivers, supporters and medical professionals -- anyone who helps to build a better quality of life for those diagnosed with PMS.


How did this change come about?


The Board of Directors has been in discussions for more than a year about our logo and what it should represent. We studied our mission and our goals for inspiration. We wanted our core values of community and inclusion to be represented. We wanted an image that was inclusive of all the individual lives we touch. We believe this image best captures all those criteria. Our new logo shows we are truly “An International Alliance of Support and Science.” We want to thank Troy Scillian, father to Mason, for helping to guide us in choosing this symbol.


What about the people with tattoos?


Chromosome 22 will always be part of our identity. That won’t change. The chromosome unites our families. The Foundation unites our communities. Those who have tattoos are filling an important role by spreading awareness of PMS. It shows dedication to the cause and commitment to their family member affected by the syndrome. We look forward to seeing the many ways our new logo is used to do the same.


I’m sold. Are items available with the new logo?


We’re excited about our new look and are confident you will be, too. You’ll be able to buy many items -- mugs, t-shirts, can coozies to name a few – at the conference at the end of this month. If you’re not going to the conference, we’ll have items available at our PMSF Store at www.pmsf.org shortly after the conference. By sporting the new look you can help to raise awareness of the syndrome.



24 Hour Giving Challenge was a great success

For the second year in a row PMSF finished at the top of the Giving Challenge! Did you know that no nonprofit has ever done that twice in a row?

It was very exciting and nerve-wracking at the last half hour, but PMSF prevailed, due to the generous support of family and friends of the Foundation.  Did you know that 14% of our donors gave within the first 19 minutes of the event and 31 donors gave almost $5,000 in the last 10 minutes of the event?  This has positioned us well for matching dollars and put us over the top to take first place!

Our final numbers so far are as follows:  Leaderboard donations $73,960.00, PayPal Donations, 1,335.00, Individual Matching Funds, 2,250.00.

Incentive Grants we have received: $2,000.00 for most donations from foreign countries, $4,000.00 for most profile clicks, $15,000.00 for 2nd place for most unique donors.  Total Received to Date:  $98,545.00!  We  are still expecting 1:1 Matching dollars to come in as well as other possible incentive grants.  We will keep you posted as our numbers are still climbing!

We want to thank all of you who sent the beautiful pictures of your children, which were included in our Giving Challenge Facebook thumbnail graphic campaign.  Did you know that over 90 families participated?  Some of these graphics were included in the YouTube video made specifically for the 24 Hour Giving Challenge.  If you haven't watched it yet, please click the link below as it is a touching video and shows how kids with PMS challenge rare disease every day. https://www.youtube.com/watch?v=TNmc2K0d2i0 Did you know this video was viewed by 2,920 people and shared from the Giving Partner’s Facebook page 64 times?  Talk about raising awareness!

We will be reporting on the final numbers and incentive grants awarded as they are confirmed by the Community Foundation of Sarasota County. This could take several weeks as nearly 400 nonprofits in our area participated in this Challenge.  Did I mention that no nonprofit has ever won it twice in a row?

We thank you for your phone calls (even the one at 5 a.m. EST), emails and words of support. The staff and I are so blessed to be a part of this wonderful organization.  In the weeks leading up to the 24 Hour Giving Challenge and during the 24 hours itself PMS families and friends were engaged on the PMSF Facebook pages and Twitter in real time.  We encourage all of our members to join Facebook and Twitter as they are great communication tools between the Office Staff, Board of Directors and PMSF membership.

Once again, the Board of Directors and I want to thank all who participated and for engaging your friends and families in this great campaign to raise over $98,545 in 24 hours for PMSF!  You all are truly remarkable!


Barbara Cruz

PMSF Executive Director

Phelan Lucky in 50 States and Internationally

By Jen Randolph

Our family is feelin' really lucky.

We set out to sell a few T-shirts for a local St. Patrick's Day event and it quickly caused a national stir in the special needs community.

The shirts were intended to raise awareness for the Phelan-McDermid Syndrome Foundation and also raise some money. We thought it would be a cute idea if we all wore matching T-shirts Saturday, March 15, for the St. Patrick's Day Loop in Wilmington, Del., and also have a cute shirt for the kids to wear to school on St. Patrick's Day, March 17.

After brainstorming, we came up with the idea of the phrase PHELAN LUCKY, which seemed quite appropriate given our gratitude toward the Foundation for all that they do for our family, the upcoming holiday and of course, Dr. Katy Phelan's love of the Boston Celtics.
Dr. Katy Phelan and her Phelan Lucky T-shirt, worn in Louisiana.

At first the idea was simple, sell a couple of shirts to our friends and family and make a couple hundred dollars while we were at it. However, the shirts, designed by our good friend Andy Cruz at House Industries, proved to be a hot commodity. Locally, our friends and family thought they were great so I put it on Facebook. It kind of exploded after that.

At the end of our three-week campaign on booster.com we sold 488 shirts, got at least one shirt in each of the 50 states (four made it to Shanghai, China), and raised $10,950.00 for the foundation. As time was running out on the campaign we still did not have anyone buying the shirts in six states. So, my father's friend kicked in to help. He cold-called families in those states and found people to buy the shirts so that we would meet our goal of making sure at least one person had a PHELAN LUCKY shirt in every state! Thank you so much!

Today, I am still receiving requests to order the shirts. Unfortunately, the campaign is over, but due to the high demand, I feel confident that Jack's PHELAN LUCKY campaign will become an annual fundraiser.

Thank you to all of the families who supported us by buying shirts and sharing with your circle of friends. For those of you who missed out, I promise to remind you next year.
The Randolphs are certainly PHELAN LUCKY to be associated with such an incredible group!

Nick Assendelft contributed to this story.


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Copyright © 2014 Phelan-McDermid Syndrome Foundation. All Rights Reserved.




Mission Accomplished 2013 – Challenge Accepted 2014!

On behalf of the PMSF Board of Directors we want to thank
EVERYONE that contributed in 2013 to help us exceed our
projected income goal.  As a matter of fact, we
“blew the top off” the thermometer. The goal was $277,000.
We raised $472,115! A significant portion of the funds
raised came from the Giving Challenge last year. We had no
idea  what to expect given it was our first year to participate
and the $145,000 from the Challenge (which consisted of
$90,000 in  contributions and $55,000 in matching gifts,
grants and awards)  was a huge surprise. We raised
THE MOST out of 285 non-profits.
A total of 678 contributions were made to PMSF from 40
different states and 15 countries.

This year’s Giving Challenge goal to surpass the $90,000
contributed  directly from PMSF families and their generous
networks is a lofty  goal. However, we believe it is entirely
possible. There’s no doubt  we have a lot of families and
friends of PMSF that are passionate about helping. And,
the Giving Challenge gives contributors a chance to have
their donation multiplied by a matching gift, grant or award.
It is paramount that EVERYONE contributes what they can
in 2014 so  we can advance our understanding of
Phelan-McDermid Syndrome  and potentially unlock some
of the mysteries of Autism.
Learn more about the 2014 Giving Challenge by clicking

If you are here learning more about Phelan-McDermid
Syndrome and  considering a donation I encourage you
to take a peek at the following link.  It’s an on-line brochure
with details about our research  efforts.
Click Here:
We’re embracing today and empowering tomorrow!

Please gear up for this year’s Giving Challenge May 6th and 7th.
Do what you can to help that “special someone” you know
affected by Phelan-McDermid Syndrome.

Kurt Koester – Kylie’s Dad

Urbandale, Iowa
Director/Fundraising Committee Chair

Phelan-McDermid Syndrome Foundation