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Your Support Can Change Someone’s Life

I received this email and it struck a cord. We have donated 2 One day foundation courses to the silent auction and hope you will give your support too.

James 

Our Journey of Hope

What if you were told that your child had a disease with no known cure?  What if you were told that your son might be in a wheelchair by his teens?  What if you were told that your only child might not make it to adulthood?  What would you do?  Where would you even start to look for answers?

In May of 2009, our 5 year old son Stephen was diagnosed with a horrible, degenerative and rare genetic condition called MPS IV B, or Morquio B.  It is one of approximately 17 disorders that falls under the name MPS, or Mucopolysaccharidosis.

This is not something a person comes across every day.  In fact, most of the doctors we have had to visit for Stephen’s various tests haven’t seen a patient with this condition.  More frightening, many have never even heard of this condition.  We couldn’t find any information when we tried to research it ourselves.  This condition manifests itself in varying degrees.  Could Stephen have a mild form of Morquio B or a severe one?  No one can tell us for sure.

There is precious little funding out there for the treatment of rare diseases: cash-strapped governments see no political benefit and the pharmaceutical corporations see minimal profit potential.  And yet, with a proper level of funding, many rare diseases would be treatable!  Our son Stephen has one of those rare diseases.  And indeed, there are therapies for some forms of MPS.  Just not his.  It didn’t take us long to decide that it was our destiny to raise funds and awareness around the specific affliction of Morquio B – not to help just our son, but to offer hope for a better, longer life to a forgotten few around the world.

We have created a fund called the MPS IV B Donor Advised Fund in collaboration with the registered charity The Canadian MPS Society.  This fund has been set up to support research in all areas of study relating specifically to MPS IV B (or Morquio B).  It is our mission to raise funds for research and develop a better understanding of this disease. It is our hope that this research will lead to a treatment.

There are some very knowledgeable researchers worldwide who have been studying Morquio B for several years.  Our first fundraiser, A Starry Night, was a huge success.  It enabled us to put forward a request for proposals for a $40,000 research grant through The Canadian MPS Society.  We are planning our next fundraiser for October 22, 2011, and it is our goal to raise enough funds to continue to support these researchers on a yearly basis until a treatment is found.

We hope that you will consider becoming a part of changing someone’s life by attending our event and learning more about MPS and rare disease.  Burrowing Owl Estate Winery has generously donated a rare double magnum of 2008 Merlot that we hope you may be interested in!

If you can’t make it to the event we hope that you would consider making a monetary donation by visiting our website, www.morquiob.com, and clicking on the donations button, or by mailing your donation to the Canadian MPS Society with “Morquio B Donor Advised fund” clearly marked in the memo section.

Thank you for any support you may wish to offer,

Dan and Tina Priest

MPS IVB Donor Advised Fund

Through the Registered Charity,

The Canadian MPS Society

Registered charity# 12903 0409 RR0001                                                                     

Journey of Hope

Second Annual Gala Dinner and Silent Auction

Sponsored by Northern Building Supply Ltd

Benefiting the MPS IV B (Morquio B) Donor Advised Fund

www.morquiob.com

This year’s event will take us to Italy!

 $75.00

Advanced ticket sales only

This will include

An Exquisite 4 Course Plated Dinner at

The Executive Airport Plaza Hotel and Conference Centre

7311 Westminster Highway, Richmond, BC

on

Saturday, October 22, 2011 – doors open at 6:00 pm

Outstanding Entertainment

Exciting Silent Auction Items

A Fun and Unforgettable Evening Out!

 Tickets purchased by September 15th will be entered into a draw to win a

one night stay at the Executive Airport Plaza Hotel!

We are proud to feature at our auction

A double magnum of 2008 Merlot – one of only 12 bottles made.

Only available at Gala Fundraisers!

Donated by Burrowing Owl Estate Winery

For tickets or any additional information please visit our website www.morquiob.com

or email: admin@morquiob.com or dan-priest@shaw.ca

Your Support Can Change Someone’s Life

MPS IV B Donor Advised Fund through the registered charity

The Canadian MPS Society (charity #12903 0409 RR0001)