e-connection
An electronic resource for families affected with MPS & related diseases - January 2019 edition
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Dear (Contact First Name),
Welcome to the January 2019 edition of the Canadian MPS Society's e-Connection...our monthly newsletter. We hope that the first month of 2019 has been a happy one for you and your family!
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Canadian MPS Society News and Updates
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Upcoming Events
February 4 - 8, 2019
WORLDSymposium
Orlando, FL
February 14 - 16, 2019
Asia-Pacific Lysosomal Conference
Auckland, New Zealand
February 28, 2019
Rare Disease Day
Global
April 14 - 16, 2019
CADTH Symposium
Edmonton, AB
May 3, 2019
Canadian Metabolic Family Workshop
London, ON
May 15, 2019
International MPS Awareness Day
Global
May 15, 2019
16th Annual Ignite Hope Gala 'RARE'
The Vancouver Club, Vancouver, BC
May 15, 2019
'Dress to Impress' for International MPS Awareness Day
July 5 - 6, 2019
International MPS Network Meeting
Serbia
July 26 - 28, 2019
Canadian MPS Society National Family Conference
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The
16th annual
Ignite Hope Gala
will be held on
May 15th, 2019
(International MPS Awareness Day)
at
The Vancouver Club
Vancouver, BC
We are planning another spectacular evening of fun and entertainment, delicious food and wines, and the opportunity to help raise funds to help families across Canada affected by MPS and Related Diseases.
We hope to see you and your friends there!
Tickets go on sale in February
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2019 National Family Conference
We are gearing up for our
2019 National Family Conference
and would like to hear from you.
The 2019 Conference will be hosted in Ontario, Canada from July 26 - 28.
In order to help us program the Family Conference, please answer the following questions:
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Do you plan to attend the 2019 National Family Conference?
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If yes, will you be applying to the Society for a bursary to attend?
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How many additional adults will be attending with you?
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How many children will be attending with you?
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Thank you for providing your feedback!
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We would like to offer our heartfelt thanks to everyone who donated to our annual fundraising campaign or helped to promote it for the Society.
We reached our target of raising $10,000 to help fund our Family Assistance Programs. All funds raised directly support Canadian families affected by MPS and related diseases.
We still have so much more to do, so please consider donating to the Canadian MPS Society's Annual Fund throughout the year, or through our monthly donor program.
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Starting the New Year with Good Choices
We were recently contacted by Jenesta Hubley who is a cousin of Ryan Hunt, a wonderful young man in Nova Scotia who has MPS II. Jenesta works for a company called Epicure. Epicure produces preservative-free mixes and seasoning packets which, when combined with fresh ingredients, make delicious and wholesome meals that your entire family will love.
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Epicure believes in giving back, and is partnering with the Canadian MPS Society to raise funds for MPS in a special
February fundraiser.
All you have to do is contact Jenesta at
aaronjenesta@gmail.com
for details, tell your friends about Epicure and this fundraiser, and place an order. Jenesta will take care of the rest!
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Fundraising is Easy with Epicure:
- Epicure's three delicious collections are priced at only $20 or $25 each.
- The minimum order is only $250, which is reached with the purchase of just 10-12 collections.
- Jenesta will provide you with an envelope for tracking orders and keeping cash or cheques.
- Once you have placed your order, Jenesta will take care of everything else for you.
- Once placed, your order will arrive in 7-10 business days. Each collection is packaged in a clearly-labelled gift box.
- Epicure will send a cheque to the Canadian MPS Society with 40% of the proceeds within 10 days of your order being placed.
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Hillary's 60th Birthday Fundraiser
We would like to tell you about our Star Fundraiser, Hillary Rosen! Hillary, who is the grandmother of Haylee Sayner (MPS I-H), decided that for her 60th birthday she would ask her friends to donate to the Canadian MPS Society through a Facebook Fundraiser.
Hillary has raised an amazing $2200 to support MPS Families in Canada!
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Haylee with Mom Meaghan (right) with Haylee's
aunt (left) and great aunt (centre).
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Hillary and Haylee blow out all the candles!
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Haylee and Hillary having some fun together!
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We're Getting Ready For
RARE!
Our 16th annual Ignite Hope Gala
will be held on May 15th, 2019
(International MPS Awareness Day)
at
The Vancouver Club, Vancouver, BC
Do you have something you would like to contribute for our gala auction, or know of someone who would? We receive many wonderful items and certificates from various artists, individuals and businesses, and those made by some of our talented members and friends are always very popular! At last year's gala, some hand-knitted scarves were in great demand, as was a wood-carved intarsia. and this year we already have promises of a painting, as well as hand-knitted and hand-sewn items.
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Enjoying Life to the Fullest
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Hello Everyone,
My name is Natasha Kaweski and I have MPS IVA (Morquio A). I was diagnosed with Morquio syndrome when I was one and my brother, Damien, was three. My parents noticed that Damien was not growing as most toddlers do, and so they took him to the doctors who then suggested that I also be involved in all the tests that Damien was having done.
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Guest Blog from Patrick Bailey
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Author: Patrick Bailey is a professional writer mainly in the fields of mental health, addiction, and living in recovery. He attempts to stay on top of the latest news in the addiction and the mental health world and enjoys writing about these topics to break the stigma associated with them.
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Dealing with the Stress and Anxiety of Taking Care of a Child with MPS
It’s a parent’s responsibility to love and protect their children and keep them from harm’s way, allowing them to grow up strong and healthy. That’s the normal way most people look at parenting. But, what happens when their child is diagnosed with a chronic illness like MPS? Aside from worry and gathering all the information and resources they can find to help their child, parents often deal with overwhelming stress, anxiety, depression, and even guilt. Sometimes a parent withdraws from their partner instead of leaning on them for support. Stress is also significant in a single-parent household. The combination of caring for a chronically ill child, dealing with the expense of medical treatments, taking needed time taken off from work, and caring for other members of the household is all overwhelming.
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Christmas and Hanukkah Celebrations
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(clockwise from centre)
Angie, Jonathan, Matteo and Gianluca dress with holiday style!
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Connecting Rare Disease Patients Globally
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Rare Connect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
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5th Annual WORLDSymposium
February 4 – 8, 2019 in Orlando!
This symposium is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases and the clinical investigation of these advances.
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Rare Disease Day Breakfast Reception
The Canadian Organization for Rare Disorders is hosting Breakfast Reception at Queen’s Park in celebration of International Rare Disease Day.
An opportunity for patients, families and advocates to meet with Members of Provincial Parliament and other supporters.
Date:
February 28, 2019
Location:
Legislative Assembly of Ontario (Queen's Park), 111 Wellesley St W, Toronto, ON
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Brineura Treatment for CLN2
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Health Canada approved Brineura (cerliponase alfa injection), indicated for the treatment of neuronal ceroid lipofuscinosis type 2 (CLN2) disease, also known as tripeptidyl peptidase 1 (TPP1) deficiency. Please see Product Monograph attached.
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Takeda Completes Acquisition of Shire
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The Shire team are very pleased to let you know that the global acquisition by Takeda of Shire has been completed. With the completion of the acquisition comes the creation of a new Takeda Canada which unites the operations of the two companies in Canada, bringing more innovative medicines to Canadians.
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Dr. Mojan's Monthly Health Tips
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Protect your skin in winter
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It's that time of the year again, and certainly here in Ontario we are experiencing a wild winter.
Did you know that you can get sunburned during the winter months, even when it doesn't look sunny? And when it is sunny, the sun reflects off the snow making your skin even more susceptible to sunburn. Wear your sunscreen and make sure it gives you both UVA and UVB protection.
Cold weather means dryer weather. Moisturize your skin at least twice a day, and if the weather is extremely cold, cover your face to protect your skin.
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Our Vision:
All Canadians affected by MPS and related diseases are supported and empowered to live their best life.
Tous les Canadiens affectés par les MPS et les maladies apparentées sont supportés afin de vivre leur meilleure vie.
Our Mission:
The Canadian Society for Mucopolysaccharide and Related Diseases Inc. (The Canadian MPS Society), founded in 1984, serves all Canadians affected by MPS and related diseases through support, education, advocacy and by advancing research.
La Société canadienne des mucopolysaccharidoses et des maladies apparentées Inc. (la Société Canadienne des MPS), fondée en 1984, accompagne tous les Canadiens affectés par les MPS et les maladies apparentées grâce au soutien, à l'information, au plaidoyer et par l'avancée de la recherche.
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Content Disclaimer:
- The Canadian MPS Society has no political or religious affiliation and does not endorse any political candidate, political party, or religious group.
- The Canadian MPS Society does not control or guarantee the accuracy, relevance, timeliness or completeness of information contained on a linked website.
- The Canadian MPS Society does not necessarily endorse organizations or companies mentioned in this newsletter/communication, or the views, products, or services they offer.
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Support Families.
Support Research.
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to the MPS Society today.
Help us help Canadians affected by MPS and related diseases to
Live Their Best Life.
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