IPWSO Caregivers’ Forum
“IPWSO’s Professional Providers & Caregivers’ Board (PPCB) has developed an “On-line Live” help line where anyone who wishes to contact one of its directors to ask a question, get some advice, or share a problem, is able to Skype, phone or SMS one of their professionals.” This occurs every fourth Tuesday of the month from 8pm to 10pm (German time). Languages offered are German and English.
Norbert Hödebeck-Stuntebeck (chair of PPCB) Telephone: 0049 (0)178 280 82 46 skype name: norberths
(Or email: email@example.com)
Mary K. Ziccardi (Co-chair of PPCB) Telephone: 001 3308583086 skype: mary k. ziccardi
(Or email: firstname.lastname@example.org)
In the first year of operation this site received visitors from 64 countries. Eighty percent of traffic was from North America with Canada outnumbering the USA two to one. The top 5 countries were: Canada, USA, UK, Australia, Brazil.
Life Story Books
The creation of a “Life Story Book” can be a meaningful exercise for an aging person. According to the L’Arche Canada Aging and Disability web site, such a book “provides a means to integrate, share and celebrate one’s frienships, lives touched, and important moments. It becomes a person’s voice as they begin to lose their words and memories.” View a video on this meaningful activity at http://www.aging-and-disability.org/en/videos/healthy_aging/life_story_books
Aging & Disability website
Sponsored by L’Arche Canada, this site offers inspirational print and video resources for working with those who are aging with disabilities. There are sections on: healthy aging, changing needs, complex-palliative care, ending life well, and grieving. Visit http://www.aging-and-disability.org/en/healthy_aging
Canadian Organization for Rare Disorders (CORD)
CORD is inviting participation in an international survey on access to services for patients with rare diseases. You are invited to complete the survey at your earliest convenience and no later than 13 April 2012. http://www.zoomerang.com/Survey/WEB22F2B7RWB3E
On November 20, 2011, L’Arche Canada launched “an innovative, accessible and comprehensive online resource for young people with an intellectual disability, their families, teachers and others who support them.
This site is a great bilingual resource for young adults with an intellecutal disability. Everyone needs friends. Here young people can get extensive help on the topic of friendship. There are videos, stories, activities and documents. Plain language is used for young adults and “listen” buttons for those who don’t want to read. There are separate sections for families, and educators. Check it out at www.ibelong.ca
BCPWSA Student Research Project
Lara Muso, a 4rth year University of British Columbia science student is the 2011-12 recipient of the BCPWSA student research award. Her project title is: Comparison of subcutaneous and visceral adipose tissue distribution between people with Prader-Willi syndrome and controls. She is currently recruiting PWS participants of all ages. For more information check out her poster and contact her directly at landrea,email@example.com
Alan Price, a PWS parent in BC, has started a new company inspired by the physical activity needs of children with PWS. Digido Interactive delivers an immersive digital experience that makes exercise fun and rewarding for kids, and gives parents a tool to motivate their children towards physical activity.
“ We create mobile smartphone games that use movement as the controller. Our dodge ball game makes you actually jump to avoid the balls! Our games are free to use and very soon, we will be delivering a website where all the exercise your child is doing can be tracked in a way that will appeal to your children and where they can earn rewards with their activity. We help you and your child to track the exercise they are getting with our games as well as the other physical activity they are getting, such as playing sports or going on a walk.”
Check out the online materials:
Digido’s games are available in the iTunes store:
MotionMaze – a maze game where your movement in the maze is propelled by your walking in real life
Pop & Dodge – a dodgeball game where you jump to avoid the balls as long as possible
MotionMaze TrickOrTreat – a Halloween version of MotionMaze where you also pick up candy corn and can compare yourself against your friends.
PWSA – UK
The PWSA-UK has launched their newly designed website at www.pwsa.co.uk Check it out. New on this site is an area for people with PWS.
To get an international perspective on PWS news, views, and thoughts, visit the IPWSO blog at http://ipwso.blogspot.com. As with all blogs, readers are encouraged to add a comment. You never know when your comment will be just what is needed to help someone else.
PWS Associations can take advantage of substantial discounts for bulk purchase of books by Terrance James, for their membership or resale. Contact firstname.lastname@example.org
The BCPWSA is subsidizing the cost of postage for books by Terrance James ordered by members in good standing. The Alberta PWSA is covering postage for any individual or family living in Alberta.
Alberta PWSA AGM speaker
Dr. Terrance James was the guest speaker at the Annual General Meeting of the Alberta PWSA held in Airdrie, June 11. He spoke on “PWS Quality of Life: A 22 Year Follow-up in Western Canada.”
Meagan Michie – Special Olympics success
Meagan Michie, a 21 year old Ontario swimmer with PWS, won four gold medals in swimming events at the 2011 International Special Olympics World Summer Games held in Athens, Greece at the end of June. Meagan was part of the 151 member Canadian team competing with 7,000 athletes from 180 countries.
Meagan finished first in the 200 M Individual Medley, 200 M Breastroke, 100 M Butterfly, and as member of the 4 x 100 Medley Relay. For full story click here.