Ontario Premier Kathleen Wynne helps raise
awareness of Phelan-McDermid Syndrome
March 13, 2017 -- Toronto: Ontario Premier Kathleen Wynne today is taking part in a worldwide effort to raise awareness of Phelan-McDermid Syndrome. Ms. Wynne will be wearing a “Phelan Lucky” T-shirt in solidarity with thousands of others, including dozens in Canada, in support of those affected by the rare genetic disorder.
"By wearing the 'Phelan Lucky' T-shirt, I hope to help raise awareness of Phelan-McDermid Syndrome and support research that will help people living with this rare genetic disorder," Wynne said. "I want to thank the Phelan-McDermid Syndrome Foundation Canada for all the great work they do for those affected by Phalen McDermid and their families. There is much work to be done to find a cure but with your dedication, compassion and advocacy we are on our way."
The Phelan McDermid Syndrome Foundation is an international volunteer group that raises awareness of the syndrome, offers family support and funds research into finding a cause, and ultimately a cure, for PMS. Greater awareness by supporters such as Ms. Wynne means more families and medical professionals will learn about the syndrome, and children and adults diagnosed can receive the help they require.
A group of Canadian parents who have children with Phelan-McDermid Syndrome are setting up the Phelan-McDermid Syndrome Foundation of Canada to support families, raise awareness and push research into finding the Syndrome’s cause and discover ways to minimize its impact. There are 62 known cases in Canada.
The cause of Phelan-McDermid Syndrome is a missing or compromised portion of chromosome 22. The Syndrome is named after Dr. Heather McDermid of the University of Alberta, who did key chromosomal research, and Dr. Katy Phelan of the United States, who first identified the condition in the late 1980s. The Syndrome affects a patient’s physical and mental development. Those diagnosed lack functional language abilities, and some may experience seizures.
The number of cases worldwide is unknown, but as of November 2016, there were approximately 1,400 diagnosed members of the Phelan-McDermid Syndrome Foundation around the world. Due to the relatively recent discovery of this syndrome, significant work remains to be done in terms of understanding the condition and developing appropriate treatments to improve the quality of life of those affected.
Here's what you need to explain Giving Challenge to your supporters
Below is a letter you can send out to your family and friends asking them to participate in the 2015 Giving Challenge. You can customize this in any way you want, add a personal message, tell them about your son or daughter or add a photo. A personal touch can have a huge impact. You can contact Jennifer Randolph at
, Susan Lomas at
or Nick Assendelft
us for advice.
Hello friends and family,
The Toronto Maple Leafs have done it in hockey. The Chicago Bulls in basketball and the Williams sisters have done it at Wimbledon. Now, it’s the Phelan-McDermid Syndrome Foundation’s turn to do the same. Next month is the Giving Challenge. We were the champions the past two years. With your help we can threepeat and join a venerable list of the all-time best teams.
Many of you are familiar with the Giving Challenge. For those who aren’t it is a 24-hour fund-raising opportunity for non-profits from none to noon Sept. 1-2 through the Sarasota Foundation. We’re the reigning champions, coming in first in 2013 and 2014. Now, let’s score the hat trick!
We’re asking you Rise to the Challenge and tap your network of family, friends and acquaintances. Ask them to mark the September dates on their calendar. Then, encourage them to donate whatever they can at www.givingpartnerchallenge.org on Sept. 1-2. (A link that will take them directly to the PMS page will be provided on Sept. 1.)
We can win in a number of ways: The more people who donate the better chance we will have to qualify for incentive grants. For example, if our Foundation has the most new donors in the 24-hour period we could win $10,000! Also, The Patterson Foundation will match any new donor, dollar-for-dollar, up to $250. A new donor is considered someone who DID NOT participate in last year’s Giving Challenge. And there are other incentives, too.
So, you can see why it’s critical that we hit a home run with this year’s Giving Challenge. The success of The Phelan-McDermid Syndrome Foundation depends on the support of its members, their families and friends. It’s a grand slam opportunity to help in a way that can score a HUGE win for our children.
We know there are other people who you know would be happy to support our Foundation and families. Please let them know about the 2015 Giving Challenge and ask them to Rise to the Challenge, too. Encourage them to pass the letter along, too.
The Giving Challenge is a great opportunity for us as a Foundation to raise awareness and fund family support and research. Feel free to contact Jennifer Randolph at
, Susan Lomas at
or Nick Assendelft
with questions. We’ll be happy to answer them.
As always, your support is so greatly appreciated! Let’s Rise to the Challenge … and THREEPEAT!
The PMSF Fundraising Committee
Traveling this summer with a child who has PMS?
Planning can relieve some of the stress
By Tony Samuel
Father to Nadia
Summer break is upon us and traveling with children who have Phelan-McDermid Syndrome or autism comes with its own special challenges.
Vacation time requires advance planning and thorough execution. For Phelan McDermid Syndrome families, weeks and even months of planning is critical to ensure a successful vacation.
Having a checklist will help to make the vacation experience great for all members of the family. It's best to reach out to the hotels, resorts and theme parks etc. to see if special accommodations can be made for our children. The guest relations department may be able to help.
Some theme parks and recreational areas may have special wristbands for those with disabilities. Special need families may also be able to skip the line and get VIP treatment. It's important to have a note from your primary family doctor explaining your child's specific condition, along with any recommendations. Also, bring along any appropriate medical documentation should your child have a medical incident and you're helped by emergency personnel who might not be familiar with PMS.
Special toys and blankets must be packed to make our children feel at home. As with other autism related disorders, PMS kids thrive on structure and routine activities. Even though they may be away from home, it's important to have a semblance of normalcy. At home routines need to be incorporated into the vacation experience.
For our children with sensory issues, families must ensure ear plugs and headphones are packed with other essentials. We should also have a recent photo of our child in case she happens to wander off.
Is your child still in diapers, like so many PMS kids? If they have a special size or brand that you don't know will be available at stores at your destination, check with your hotel to see if you can ship some ahead of time so you don't need to pack so many and they'll be waiting for you at your arrival. Otherwise, do some research in the city to which you are going and contact some medical supply stores to see if they carry your brand or style.
If you're the parent of a child older than 18, don't forget to pack your guardianship documents and a state-issued ID to prove you have the authority to make decisions for your adult child.
Wings for Autism is a special program that was developed at Boston Logan Airport and it now has affiliates across the country, where families are able to get a free airport rehearsal ahead of their trip. Families can experience the entire airport boarding experience, including sitting on a runway with the plane's engine on. Although your child may not cooperate fully at first, it's still a great opportunity to experience the airport boarding process in a safe and healthy environment.
With our daughter Nadia, we travel with her iPad, DVD player, toys, books and accessory chargers to ensure she is having a good time. Although Nadia is not ready for a plane trip, we find opportunities to travel by car.
A successful vacation requires preparation. PMS kids can enjoy traveling and families can have fun!
MORE TIPS: Parenting Special Needs magazine offers these 8 things to consider
when planning summer break for your special needs family member.
PSN magazine also offers these 7 special accessible vacation spots.