Our Family Gathering at Mininastics on Saturday was wonderful!
The kids had an awesome and active time with Jason and Julie the instructors from Mininastics and the parents had a great time getting to know each other and sharing information and stories. Dan our board chair stopped by to welcome everyone to the OPWSA and had a couple of stories of his own. Thank you so much to the families that made it out on this “almost” long weekend!
OPWSA will be hosting their Fall Family Conference once again in Toronto on October 18th 2014. Location and details to come!
Report from the Co-chairs
Cathy Mallove and Dan Yashinsky
Our biggest recent news is that OPWSA produced, with help from SickKids Foundation and an amazing team of leaders, a wonderful fall conference. Bravo to first-time Chair Phyllis Thompson, co-chair Iris Gershon and their team, including Lindsay Bouwkamp for preparing all the food for the recreation program; Stefania DeMaria for organizing and delivering a wonderful recreational program; Jessie Phillips and Debra Baptiste for putting together all the registrations, exhibitors, and logistics; Nita Goldband; Nancy Howson; and Patricia Parker. And many many thanks to our presenters for sharing excellent and useful information, and leading great discussions and dialogue.
From newly diagnosed families to PWS “veterans,” we all had a chance to talk and connect, and to share and learn as a community. As always, the value of these gatherings is as much in the hallway conversations as the official program. Throughout the day there was a constant buzz as families connected with each other and with the presenters. The first-time PWS Fair was a great success, with people picking up lots of valuable resource material. There was strong interest in the new Red Yellow Green edition (many thanks to Jennifer Gignac and Doug Lowry and Karen Balko for all of their hard work) and in the fridge locks program. We gave many families locks to take back home with them. At the AGM we said good-bye to long-standing Board members Kathryn Costa, Donna Evans, Linda Netherton, and our steadfast, much-beloved retired Executive Director Nita Goldband. All of them have agreed to continue as volunteers in the areas of the organization they are most passionate about, from Shadow Lake, to the conference, to outreach, to the new initiative to build an Ontario-based rehab facility.
We were very fortunate to recruit three exceptional new Board members: George Yang, Sukanya Pillay, and Nancy Howson. We welcome them to OPWSA and look forward to working with us on the Board. Planning is already beginning for next fall’s conference, and for a collaborative conference with FPWR Canada in May. We are also sending Jessie out to do more of the family gatherings, which were a big hit in 2013.
We would like to give major thank-yous to Jessie Phillips, our Family Support Coordinator, and to Debra Baptiste, our Administrator, for all of their hard work, compassionate engagement with our community, and unfailing positive spirits.
New OPWSA Board elected at AGM (*new board member)
Ray de Breyne (treasurer)
Cathy Mallove (co-chair)
Ana Snjaric (past president)
Dan Yashinsky (co-chair)
PWS Clinic Update
The OPWSA is happy to announce that Jessie, our Family Support Coordinator will be joining forces with Dr. Glenn Berall and Karen Balko, Registered Dietitian (specializing in PWS) at The Infant, Child and Adolescent Nutrition Clinic once a month for the Prader Willi Clinic.
The clinic is typically held on the last Thursday of each month (starting in January) and appointments can be made by emailing or calling The Infant Child and Adolescent Nutrition Clinic.
Address: 301-1100 Sheppard Ave. E (very close to the North York General Hospital)
Jessie is available to meet in conjunction with the team between 11:00 and 1:30 each clinic day. You can just drop by to say hi or contact her to book specific appointments during her clinic hours. She is also available to meet at the office by request on non PW clinic days.
Upcoming Clinic Dates:
Thursday June 26th 2014
Thursday July 31st 2014
Thursday August 28th 2014
Thursday September 25th 2014
Family Support Coordinator Corner
By Jessie Phillips
Please join us on Facebook! https://www.facebook.com/pages/Ontario-Prader-Willi-Syndrome-Association/106828009519275.
You can send any relevant announcements or information for posting to our page to firstname.lastname@example.org anytime.
As always please let me know if there is anything I can assist you with I can be reached at 416.997.5835 or email@example.com
You can reach Debra Baptiste, our office administrator, by email at firstname.lastname@example.org or phone: 1-416-481-8657
A Message from Karen Balko, your Registered Dietitian for PWS
Hello PWS families and caregivers!
There has been lots of change to my practice, but meeting the nutritional needs for your child is very important to us. Given this vital connection, once a month, I will be working in Dr. Berall’s PWS clinic. I can see your child along with his team to provide counseling for you and your family/providers. During this clinic or other days, you may also book a 1 hour private session prior or after the clinic for more detailed nutritional counseling/dietary planning or assistance with any issues such as advocacy to your child’s school for an educational assistant. The private sessions are covered if you have insurance that covers a registered dietitian. You can also book an appointment to see me in the Vaughan/Richmond Hill area or in your home at a time that is convenient for you. For this service please email me email@example.com You can also see me at Kindercare Pediatrics, 491 Eglinton Avenue (near Avenue Rd) – for appointments to Kindercare please email firstname.lastname@example.org
Other services that I can help you with are:
- Phone or skype consultations
- Visit to schools or group homes to discuss food security, nutrition and Prader Willi Syndrome
- Training the nutrition plan to providers
- Tailored 1-2 week menu plans based on your family’s eating habits/lifestyle and child’s calorie and nutrient needs – this can be done through a preliminary phone consultation to determine lifestyle, preferences, cultural foods, and needs – this will allow you and your family to be more successful at planning ahead and ensuring dietary consistency! For the months of January and February I offer you this service at a reduced rate of 150.00 for a 1 week menu plan. This includes intake assessment, planning of the diet, tailored menu plans for all meals and snacks and a grocery list.
OPWSA is a volunteer-run charity founded in 1982 and supported entirely by donations.
ONTARIO PRADER-WILLI SYNDROME ASSOCIATION
welcomes you to the community of families, caregivers, medical researchers, and educators who live with and support those with Prader-Willi Syndrome. This is a community full of love, hard-earned knowledge, medical and scientific expertise, and a deep commitment to better the lives of those we care for. We work closely with the Foundation for Prader-Willi Research Canada, and with organizations across Canada and the world. Through our Family Support Coordinator and a network of family-to-family communication, our goal is to create rich, healthy, and meaningful lives for people with Prader-Willi Syndrome.