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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
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 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.