1. 15-MINUTE Skype Chat with Ryan Robbins & Robert Lawrenson from Sanctuary

http://www.ebay.ca/itm/270874204617?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649#ht_500wt_1024

2. 15-MINUTE Skype Chat with Ryan Robbins & Robert Lawrenson from Sanctuary

http://www.ebay.ca/itm/270874205815?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649#ht_500wt_1024

3. Autographed Erik Christensen Rangers Jersey Signed by the Entire 2010/2011 Team

http://www.ebay.ca/itm/270874233611?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649#ht_500wt_1024

4. Men’s Marine Canvas Jacket worn on the Set of Stargate Atlantis (Authentic)

http://www.ebay.ca/itm/270874212306?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649#ht_500wt_1024

5. Autographed Star Trek Poster signed by Six Characters

http://www.ebay.ca/itm/270874218580?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649#ht_500wt_898

6. Autographed Star Trek Cast Photo of Vaughn Armstrong

http://www.ebay.ca/itm/270874228121?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649#ht_500wt_1024

7. Autographed Stargate Universe Cast Photo of Mark Burgess

http://www.ebay.ca/itm/270874229620?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649#ht_500wt_1024

8. “Cher Rinoceros” by Graciela Rodo

Boulanger

http://www.ebay.ca/itm/270874236363?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649#ht_500wt_1024

Our last online auction, which was live in September, raised over $20,000 for MPS II research. Our Once Upon a Cure Gala on September 24, 2011, raised enough to fund a $100,000 MPS II research grant. Click here to read about the request for applications we currently have out (the application deadline is February 29, 2012) and to read about the grants we have funded in the past.

Thank you in advance for your support. As I write this, I am sitting in a hospital in North Carolina while Trey participates in a clinical trial for a treatment that will hopefully extend his life. However, only a cure will save it. You are making that happen.

DUBLIN, Nov. 18, 2011 /PRNewswire/ — Fourteen caregivers from around the world have been announced today as Recipients or Distinguished Honorees in the inaugural Shire BRAVE Awards, an international program that aims to recognize everyday people who serve as caregivers. Launched by Shire in June 2011, the BRAVE Awards is the first and only awards initiative of its kind that honors the courage and dedication of non-professional caregivers, the unsung everyday heroes who provide regular and consistent care for other people.

“Helping another person through consistent, dedicated care is one of the most generous acts and we believe that such caregivers deserve to be recognized and celebrated,” said Angus Russell, Shire Chief Executive Officer. “This unique program strikes to the core of Shire’s purpose of enabling people with life-altering conditions to lead better lives. We are privileged to honor these individuals who are models of courage and selflessness through their devotion to caring for others, often in the face of adversity.”

Shire received nearly 400 nominations from seven countries over 10 weeks for the BRAVE Awards. The BRAVE Awards Selection Committee, which included select Shire employees and Gary Barg, Editor in Chief of Today’s Caregiver andcaregiver.com as well as author of The Fearless Caregiver, reviewed and ranked the nominations based on the qualities that define Shire’s own BRAVE culture: respect, courage, dedication, impact and patience. Shire’s nearly 5,000 employees from across the world helped to select the Recipients and Distinguished Honorees from the pool of eligible finalists.

Shire is proud to honor 14 people as part of the inaugural BRAVE Awards; 10 Recipients each will receive $10,000 USD or the local currency equivalent, and four Distinguished Honorees will each be awarded $2,500 USD or the local currency equivalent, for a total of $110,000 USD.

“The BRAVE Awards is an outstanding program that recognizes those who selflessly dedicate their lives to the health and well-being of others who need it most,” said Mr. Barg. “The 14 inaugural recipients and honorees are heroes who are truly deserving of this recognition.”

2011 BRAVE Awards Recipients*
While they come from a range of different backgrounds and face unique challenges, the Recipients and Distinguished Honorees are connected by their tireless dedication and commitment to others.  To read more about and hear from each Recipient and Distinguished Honoree, visit www.ShireBRAVEAwards.com

RECIPIENTS:

Zarrar Beg: Zarrar cares for four handicapped children, including his three daughters, who have a form of Mucopolysaccharidosis (MPS), and his autistic son, all the while striving to fill every day of their lives with as much joy as they’ve given him and his wife.

Natalie Gibbs: For 14 years, Natalie has selflessly acted as her daughters’ “arms and legs” after they were diagnosed with Spinal Muscular Atrophy (SMA), a progressive disease that leads to loss of muscle control and movement.

Joan Metz: Joan has spent nearly 12 years caring for her adopted daughter Sophie, who suffers from the effects of Shaken Baby Syndrome, making sure that she receives speech therapy and gets the regular care she needs to thrive in a loving family environment.

Christine Muller: Thanks to Chris’s strength, her son Ben, who has Duchenne Muscular Dystrophy, learned to ride a bike at six years old, walked until he was 14 years old and is now a thriving 26 year-old.

Ronna Reid: Ronna has been her daughter Amanda’s primary caregiver following her Rett Syndrome diagnosis in 1991, all while raising three other children diagnosed with other various disorders and advocating tirelessly for Amanda’s future.

Micky Todd: For over a decade, Micky has dedicated his life to supporting whoever in his family is in need of help, beginning with his father-in-law, and including his own father and later his mother, who is dealing with both Alzheimer’s and arthritis.

Rosemarie Veliz: Rosemarie has committed herself to caring for her son, Chase, who was diagnosed with a form of Mucopolysaccharidosis (MPS), and to becoming an integral part of his medical team over the years.

Jennifer Wheeler: Jennifer has spent the last nine years dedicated to her son, Brandon, who was involved in a motorcycle accident that left him paralyzed from the neck down.

Matthew Wolfson: Matthew stayed by his now fiancée’s side when she was in a coma following an accident; after she emerged from the coma, Matthew stepped in to support her in their life together.

*One Recipient requested that her information not be shared in this press release.

DISTINGUISHED HONOREES:

Jennifer Alawadi: After marrying her husband, who suffered from Cystic Fibrosis, Jennifer focused on fighting for his quality of life – including a successful legal battle to win insurance coverage for his lung transplant surgery.

Douglas R. Cook: Doug has committed himself to providing the best life possible to his wife, Radene, who suffered a concussion and severely damaged spine after a plane crash.

Maria Douglas: Maria dedicated herself to her husband’s recovery after he was injured as a soldier in Iraq, giving up her job twice to become his full-time caregiver.

Vickie Whalen: Vickie has spent more than nine years taking care of her son Brandon, who was born with Agenesis of the Corpus Callosum (ACC), a disorder in which the structure of the brain that connects the two hemispheres is absent, and helping him live a joyful life.

The Shire BRAVE Awards are presented in the spirit of Shire’s BRAVE culture, which fosters an environment that encourages its employees and partners to act with integrity; create innovative solutions that make a difference; act on the needs of others; strive to be better every day; and to exemplify trust and openness through teamwork. Nominations for the 2012 Shire BRAVE Awards are expected to be open on or about March 15, 2012.

Notes to editors

About the Shire BRAVE Awards

The Shire BRAVE Awards is an international program created by Shire to honor the courage and dedication of individual caregivers. For the Shire Brave Awards, a caregiver is defined as an individual who is providing regular, consistent care for another person(s). The caregiver cannot be a professional healthcare provider and cannot be compensated in any formal way through their efforts as a caregiver.  The caregiver can be a relative, neighbor, or friend who gives their time, support, and compassion regularly, helping another person(s) who is (partly or wholly) unable to care for themselves due to health issues, injury, or other extenuating circumstance. For further information on the Shire BRAVE Awards, including official rules, legal disclosures, and privacy policy please visit www.ShireBRAVEAwards.com.

SHIRE PLC

Shire’s strategic goal is to become the leading specialty biopharmaceutical company that focuses on meeting the needs of the specialist physician. Shire focuses its business on attention deficit hyperactivity disorder, human genetic therapies, gastrointestinal diseases and regenerative medicine as well as opportunities in other therapeutic areas to the extent they arise through acquisitions. Shire’s in-licensing, merger and acquisition efforts are focused on products in specialist markets with strong intellectual property protection and global rights. Shire believes that a carefully selected and balanced portfolio of products with strategically aligned and relatively small-scale sales forces will deliver strong results.

For further information on Shire, please visit the Company’s website: www.shire.com.

Click here for The Vancouver Sun’s photos from the event (I’ll have more to come at a later date).

It’s time to blog. Reading Jared Padalecki’s tweet from last night got the emotions rolling this afternoon (“Had an amazing experience tonight with onceuponacure.com. Thank u to the Purcell’s for their incredible bravery & honesty. I feel blessed.”). This is a guy I’ve never met before last night, who has thousands or millions of fans from his show Supernatural, who gets God knows how many requests for appearances, but who still showed up for our Once Upon a Cure Gala last night. And the rest of the special guests were the same.

Amanda Tapping came dress shopping with me, then came over the next day to drop off jewelry to go with the dress she helped me pick out. This after doing numerous interviews on our behalf to spread awareness about the gala and MPS II Hunter Syndrome and while she is busy with PR for the new season of Sanctuary about to start up. In addition to having a partner (who I’d like to get to know better one day, what a wonderful man) and child and ‘regular’ life stuff.

Jensen Ackles’ wife, Danneel, from One Tree Hill, followed me around so I could introduce her to my sister, who is a fan, and was honestly good with doing that (how many actors would do that?). I’d say something about Jensen, but he kind of makes you just… speechless (in addition to the fact that he’s a really down to earth and genuinely nice guy).

Ginny Goodwin and Josh Dallas just wanted to know: “When do we get to meet Trey?” Bring him to set for lunch, they said! Lana Parrilla came over to our table to say hi to Ryan and introduce herself and Jared Gilmore to me. What a thoughtful and kind act. Robert Carlyle showed up even though he’s an incredibly private person.

Edward Kitsis, writer and producer from Lost and executive producer from Once Upon a Time, dropped (among other things) $1000 for a one day pass for two people to the Vancouver Aquarium (valued at $62).

Executive producer from Once Upon a Time, Steve Pearlman, and his awesome wife Debby, are responsible for finding our Once Upon a Cure Gala and getting Once Upon a Time involved. Debby also flew up from California to attend the gala with Steve.

Peter & Anne Marie DeLuise (who we got to spend lots of time with because they loitered until the end ) are absolutely fabulous. REALLY funny and smart.

Christopher Heyerdahl gave me the best bear hug, in addition to donating to our online auction, which raised over $20,000. One half of a research grant.

Ryan Robbins, with his girlfriend Karyn Baltzer, tweeted and re-tweeted about our gala leading up to the event and donated to our online auction and showed up to the event looking amazing. They are becoming friends, they have done so much and gotten so involved in our cause (they’ve always been friends of Ryan’s, I just never met him until a few monthes ago).

Julia & Peter Benson came and I know they have our backs for good. Touches my heart. I also met Christine Chatelain, Jen Spence & Paul McGillion for the first time, which was very cool.

Robin Dunne, after all the talk, did not take his pants off. But he did look darned good with them on.

Never got to meet Jennifer Morrison, but saw her across the room. Also never got to say thank you to Damian Kindler, creator of Sanctuary, for coming.

One of our volunteers, who has also volunteered at conventions, commented that this gala was relaxed. Formal in what you had to wear, but Jensen and Jared weren’t surrounded by 6 security guards and Amanda, Robin & Ryan weren’t sitting at a head table twenty feet away. There wasn’t a line up to get a picture or autograph. It was a small and intimate space. People got to hang out and mingle. The whole thing was honestly surreal. That this many people who get this many requests, all showed up at our Gala, was nothing short of awesome.

And that’s not to take away from all the family and friends, old and new guests who came. Kid Carson & Amy Beeman were hilarious and entertaining, as always. Dr. Paul Moxham made us laugh even though he was talking about a rare and progressive disease that affects kids. Simon Ibell and Will Blunderfield inspired. Dirty Radio rocked the house. DJ CWikii kept the party going. The Cupcakes were beautiful and FABULOUS. The Mad Hatter, Alice, Red Queen & contortionist were astonishing.

Thank you to everyone who came and sponsored, volunteered, donated, bid, got involved. Ryan and I are grateful to the depths of our bodies and souls for all your support. It is you who are helping us find a cure for MPS II Hunter Syndrome. It is you who gives us hope. Thank you for that. I don’t know what we’d do without you.

Love Deb

PS. I don’t yet have final tallies for how much we made, but I will blog when I do.

CTV’s Once Upon a Time Joins Mom on a Mission to Save Her Son’s Life

Vancouver, BC – It’s a remarkable fall for the Purcell Family, of North Vancouver. In October, their eldest child, 7-year old Trey Purcell begins a ground-breaking trial treatment called Elaprase IT, which could halt and possibly reverse the effects of MPS II the rare, degenerative disorder with which he was born. But not before the family hosts a star-studded fundraising Gala that’s got the town abuzz.

On September 24, Once Upon a Cure will transform the Sutton Place Hotel into a Gala event not to be missed. The guest list features key cast from the new CTV series Once Upon a Time including Robert Carlyle, Ginnifer Goodwin, Lana Parrilla, Josh Dallas, & Jared Gilmore, as well as the show’s Executive Producer Steve Pearlman. “When the show heard about our event and the obvious connection, they were keen to support us,” says mother Deb Purcell. Not that they’ll be the only celebrities in attendance. Amanda Tapping, Robin Dunne, Peter & Anne Marie DeLuise, Christine Chatelain, Ryan Robbins, Robert Lawrenson, Julia & Peter Benson, Paul McGillion, Christopher Heyerdahl and Jen Spence will all be in attendance.

The inaugural fundraiser features actors dressed in costume for the Alice in Wonderland themed event, emcees Kid Carson and Amy Beeman from The Beat 94.5, performances by Dirty Radio and Will Blunderfield, the reality show The Cupcake Girls making themed cupcakes for our guests and filming an episode for their show, a diamond pendant for raffle, over 120 items in the silent auction, and a live auction boasting a tour of Once Upon A Time’s Vancouver studio, a Tofino Getaway Vacation and a day of skiing with Olympian Kathy Kreiner, with all proceeds going directly to the MPS II Research fund.

“This fundraiser is really critical for our family and families all across North America” says Deb, who’s juggling the fundraiser, her three kids and Trey’s constant medical needs. “We are one of only two organizations funding research for MPS II in Canada and we need a cure. Not a treatment – a cure.” This is a mother on a mission, a mission to save her son’s life.

At the time of Trey’s diagnosis in February of 2006, the first-ever treatment called Elaprase IV was soon to be approved by the FDA, but not yet by Health Canada. The Purcell’s successfully lobbied for Trey to access Elaprase IV and become the first person in Canada on the treatment. Then in July of 2010, Deb was trained as the first non-medical professional to administer the treatment at home. In August, Trey became the first child in Canada to qualify for a new treatment, Elaprase IT, which researchers hope will halt or reverse the progression of the disease in the brain. In October, Trey and Deb will take the first of 12 weeklong trips to North Carolina for the new treatment. It’s a significant strain on the entire family, but one that they are only too happy to bear.

Through all this, the Purcell’s have remained committed to fundraising for MPS II research and have funded five research grants in the field. Once Upon a Cure is by far the largest fundraiser planned to date with the hopes of raising $200,000.”I may have bitten off a little more than I should have this time,” admits Deb. “But it’s going to be an amazing soiree and absolutely, 100% worth it. He’s our eldest, but he’s still our baby!”

The MPS II research fund, administered through the MPS Society of Canada, provides research grants to doctors working towards finding a cure for MPS II.

ELAPRASE (idursulfase) is designed to treat the underlying cause of Hunter syndrome by replacing iduronate-2-sulfatase (I2S), the enzyme that is deficient or absent in people with Hunter syndrome. ELAPRASE is a purified form of human I2S produced by recombinant DNA technology using a human cell line.

If you would like to know more about this topic, or to schedule an interview with the Purcell family, please call Deb Purcell at (604) 317-3911 or email at purcelldeb@gmail.com.

1. Lunch with Sanctuary Star Amanda Tapping in Vancouver, BC (does NOT need to be September 25, 2011)

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818549114&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

2. Women of Sci Fi Lunch – with Christine Chatelain, Sharon Taylor & Julia Benson

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818562367&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

3. Lunch with Stargate Star David Hewlett and wife Jane Loughman

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818565098&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

4. Lunch with Sci-Fi Stars Jewel Staite and Paul McGillion

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818597172&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

5. Lunch with Sanctuary Stars Robert Lawrenson and Ryan Robbins

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818599763&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

6. Personalized “Conan the Barbarian” Poster signed by Jason Momoa

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818534880&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

7. Personalized “Conan the Barbarian” Poster signed by Jason Momoa

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818535038&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

8. Stargate Atlantis Crossbow Prop

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818430966&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

9. Signed and Personalized Photograph of David Hewlett from Stargate

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818403881&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

10. Signed and Personalized Photograph of David Hewlett from Stargate

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818404052&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

11. Autographed Zac Efron Head Shot and 17 Again DVD

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818410711&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

12. Autographed Stargate Atlantis Cast Photo

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818407041&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

13. Autographed Stargate Atlantis Cast Photo

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818407962&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

14. Stargate Atlantis Season 5 Cast Photo Signed by Entire Cast

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818419331&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

15. Autographed Jewel Staite Poster

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818422012&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

16. Autographed Jewel Staite Poster

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818422793&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

17. Kids Stargate Jacket

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818445585&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

18. Framed Set Dec Picture used on the Stargate Set

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818448100&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

19. Two (2) Stargate Atlantis Cast Chairs

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818448706&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

20. Mens Military Jacket worn on the set of Stargate Atlantis

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818449516&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

21. Mens Military Jacket worn on the set of Stargate Atlantis

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818449945&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

22. Womens Guest Cast Outfit from Stargate Atlantis

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818457122&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

23. Womens Guest Cast Outfit from Stargate Atlantis

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818457962&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

24. Two (2) Sets of Gauntlets used by characters in Stargate Atlantis

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818461907&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

25. Leather Copy of “The Final Cut” Script with Autographed Photo of Robin Williams

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818463043&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156 

26. Amanda Tapping Autographed Sanctuary Canvas Chair-Back

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818464550&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

27. Amanda Tapping Autographed Sanctuary Canvas Chair-Back

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818464677&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

28. Christopher Heyerdahl Autographed Sanctuary Canvas Chair-Back

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818469197&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

29. Christopher Heyerdahl Autographed Sanctuary Canvas Chair-Back

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818469262&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

30. Robin Dunne Autographed Sanctuary Canvas Chair-Back

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818469566&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

31. Robin Dunne Autographed Sanctuary Canvas Chair-Back

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818469631&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

32. Henry Foss Sanctuary Canvas Chair-Back to be Personalized by Ryan Robbins

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818470206&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

33. Henry Foss Sanctuary Canvas Chair-Back to be Personalized by Ryan Robbins

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818470586&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

34. Malcolm Reed Autographed Picture

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818472136&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

35. Charles “Trip” Tucker III Autographed Picture

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818472622&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

36. Alexis Cruz Autographed Picture

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818475088&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

37. Jay Acovone Autographed Stargate SG1 Picture

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818476650&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

38. Jamil Walker Smith Autographed Stargate Universe Picture

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818483559&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

39. Armin Shimerman Autographed Star Trek Picture

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818509402&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

40. Dr. Meredith Rodney McKay Action Figure Signed by David Hewlett

http://www.ebay.ca/itm/ws/eBayISAPI.dll?ViewItem&item=270818373756&ssPageName=ADME:L:LCA:CA:1123#ht_500wt_1156

41. Stargate Season 2 Cast Dog Tags

http://www.ebay.ca/itm/270818358761?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1558.l2649#ht_500wt_1156

News Release

Contact: Deb Purcell                                                                         FOR IMMEDIATE RELEASE

Email: purcelldeb@gmail.com

NORTH VANCOUVER BOY FIRST IN CANADA TO RECEIVE BREAKTHROUGH DRUG

Vancouver, BC – On August 19^th Deb Purcell’s Facebook status read “And now I wait. The longest four hours of my life.” Her status was no understatement. The North Vancouver mother of three posted from a North Carolina Hospital where her eldest son, 7-year old Trey Purcell, was under general anesthetic to determine whether or not he qualified for a ground-breaking MPS II Trial Treatment called IT Elaprase, a treatment which would halt and possibly reverse the effects of the rare, degenerative disorder with which he was born.

Trey Purcell qualified for the trial. He will be the first Canadian to receive the treatment when he begins the trial in North Carolina this fall, marking the beginning of another chapter in a young life that has been full of medical firsts.

Trey was born with MPS II, otherwise known as Hunter Syndrome. Although he appeared to be a healthy baby, a series of seemingly unrelated health issues in his first two years eventually lead to the diagnosis that he had Hunter’s, a progressive disease which would cripple his body before eventually shutting it down entirely. At the time of diagnosis in February of 2006, a life-saving treatment called IV Elaprase was on the brink of approval by the FDA in the United States. Upon FDA approval of the drug in July 2006, the Purcell’s successfully lobbied for Trey to access IV Elaprase, making him the first child in Canada to receive the treatment outside of the trial. Then in July of 2010, Deb became the first non-medical professional trained to administer the treatment at home and Trey became the first child to receive the drug in the home setting from a family member.

IV Elaprase is only effective in slowing the physical deterioration of a person with MPS II. It is not able to slow mental decline, a symptom that Trey and approximately 80% of other children with Hunter’s experience. That is the major difference between IV Elaprase and IT Elaprase. IT Elaprase, which stands for Intrathecal Elaprase, is the first MPS II treatment that is able to cross the blood brain barrier and slow, halt or prevent the progression of the disease in the brain.  And so far the reported results have been incredible! It is for that reason that the Purcell’s have thrice traveled to North Carolina for the trial’s rigorous qualification process, a process which culminated in a four hour set of procedures under general anesthetic, testing the pressure in Trey’s central nervous system to ensure that it can withstand the IT treatment, which will be delivered through a port connected directly into his spine.

Trey was fortunate to not only qualify for the trial, but to be randomly assigned to receive the drug. Being assigned to the control group would have meant waiting for 6 monthes before going down for his pressure to be tested again.  Instead, Trey will have his port placed in just over a month’s time and will receive his first IT infusion two weeks later. For the duration of the six-month trial and for the first three treatments post trial, Trey and Deb will travel to North Carolina for 10 days of every month. It’s a significant strain on the entire family, but one that they are only too happy to bear.

Between now and the first treatment, there’s a lot to be done, including final preparations for their Alice in Wonderland themed ‘Once Upon a Cure Gala’ to be held on September 24 at The Sutton Place Hotel. Special Guests will include actors from a number of local shows, including: Once Upon a Time, Sanctuary, Smallville, Stargate: Universe, Stargate: Atlantis, Stargate: SG-1, Riese, Fringe, Supernatural and Eureka. All proceeds will go to the MPS II Research fund. Tickets & information at: www.onceuponacure.com

The MPS II research fund, administered through the MPS Society of Canada, provides research grants to doctors working towards finding a cure for MPS II.

If you would like to know more about this topic, or to schedule an interview with the Purcell family, please email Deb Purcell at purcelldeb@gmail.com. For more information about Trey and Hunter Syndrome, please visit: www.treypurcell.com.

I am biased. I know. I would attend this Gala and pay a fortune, even if it were a fast food meal, if it meant bringing us closer to finding a cure for Trey’s disease, MPS II, Hunter Syndrome. Fortunately, however, the meal is going to be fabulous, as well as everything else. Once Upon a Cure at The Sutton Place Hotel on September 24 is going to be unbelievable. Really unbelievable. Now, we just have to spread the word, so that people know about us. This is a first time event, for a disease that no one has heard of. So, I am here to shamelessly promote our event and give you the goods (or most of them: I don’t want you to experience the night before it arrives, but I’ll give you a sense of what’s to come) so that everyone can find out how awesome this event is going to be. And because there are so many awesome updates, I am going to break it down for you.

Emcees & Entertainment:

• Costume Designer Val Halverson from the Stargate franchise is leading the design and creation of costumes for actors for our ‘Alice in Wonderland’ themed event. Our good friends Brooke and Grizz and their acting friend Krista will be hiding behind the costumes.
• Kid Carson & Amy Beeman from The Beat 94.5′s ‘Kid Carson Show’ are emceeing. Amy has known Trey since he was a baby, before his diagnosis, so I am beyond excited that she can be a big part of this event, and I am honoured that Kid is making time for us to emcee our event.
• Will Blunderfield, Network recording artist and renowned yoga instructor, is performing. Our family went to watch him perform this past weekend, when Ryan had only ever heard him on our iPod at home. Ry’s comment after listening to him live: ‘He can really sing.’ His voice and words will bring tears to your eyes. He is a beautiful person with an amazing voice. He will sing during dinner. You are in for a treat.
• DJ Flipout from The Beat 94.5 will get the party started after dinner (I am a total foodie and The Sutton’s first class plated dinner does not disappoint), dessert (famous Sutton Place Chocoholic buffet), and the auctions (read below) are closed. Enough said.
• Dirty Radio will be performing. If you don’t know who they are and have not heard their music (you probably have, their single ‘Wanna Ride’ is all over the radio right now), you should check them out (http://www.dirtyradio.ca/). Their music hooked me the first time I listened to it. I honestly can’t wait. I will be dancing.

Raffle & Auction:

• Online auction: Amanda Tapping, David Hewlett & Jane Loughman, Ryan Robbins & Robert Lawrenson, and Jewel Staite have all donated lunches with themselves for our online auction. Peter DeLuise has donated a whole schwack of cool items from Stargate: Atlantis, ranging from a kids Stargate: Atlantis jacket (custom made by the Stargate: Atlantis costume department) to a cross bow, cast chairs & uniforms used in the show. Robin Williams signed a leather bound copy of ‘The Final Cut’, the show he worked on with Ryan in Vancouver a few years back. There will also be cast and crew photos autographed by the entire cast, autographed head shots, and loads more. The online auction will open a few weeks before the Gala, so keep your eyes peeled! We will tweet about it, post on Facebook and I will also write a blog with links on the blog to all the items.
• Live auction: Tofino package including: accommodation, restaurant GC’s and surfing lessons. Day with an Olympian package including: WB passes, accommodation, and a day of skiing/boarding with an Olympian. Zip Trek package including: Zip Trek passes & accomodation
• Silent auction: Canucks tickets, passes to Yyoga & other yoga studios, art, photo shoots, make up sessions, limosine ride with dinner at Cactus Club Cafe, jewelry by Sonja Picard & Tiffany Haziza, a black pearl necklace, a NY Rangers jersey autographed by the team, nutritional consultation, video production, Kiss & Make Up gift certificates, Sewell’s Marina boat ride, massages, golf, hotel stays, restaurant gift certificates… and these are only a few.

These are the reasons to buy tickets to what is going to be an awesome party and a must attend event. I still have goods in my back pocket that are not quite confirmed that will make it even better. I would go to this party, even if it wasn’t for a charitable cause. I kind of wish it wasn’t my event because I’m not going to be able to sit back and relax and let loose on the dance floor (Ry’s told me I need to be relatively composed and presentable )! However, in addition to the above reasons to attend, this Gala is for a charity. A charity that raises funds for research for a disease that affects kids. A progressive and rare disease that affects kids. And my son Trey.

I promise you this money will not be wasted. It will be put to research and we will find a cure. I would not do less for Trey. Come party with us and save the lives of kids whose diseases will noticeably progress between now and the month and a half until the Gala on September 24. You will be in the hearts of our family (not just Ryan and I, but Trey’s brother, sister, grandparents, cousins, aunts and uncles) and all the families whose kids are affected by MPS II Hunter Syndrome, forever. You have no idea how much your generosity means to us. You are saving our kids’ lives. It brings me to tears every time. With every donation and every ounce of support.

From the beginning of our fundraising and ‘Tacos for Trey’ events, people have taken a chance on us. Save on Foods, Happy Planet, Blue Goose Cattle Company, Bobs & Lolo, Cafe con Leche, WestJet, Shire Pharmaceuticals, to name only a very few (there are literally hundreds of people and companies who have taken a chance on us).

Recently, a number of people have taken a chance on our Gala. And it never gets old. The gratitude I feel for people who decide to get involved with our cause is such an awesome feeling. When there are so many other things they could be doing or other causes they could be supporting. Thank you, for taking a chance on us, from the very depths of my heart.

As I get deeper into the event planning world, I am finding out that it is a business. As much as I am in it to find a cure for my son’s disease, event planning is a business. Companies, people, speakers, and performers get approached for donations, sponsorships, media partnership and performances daily. So when these people, who are part of this business, still choose to get involved with us, even though everyone and their dog is asking them for something, their generosity reaches all the way to my heart, and gives me pause.

How to put it into perspective… Trey is my son. I would die for him. And right now, with this Gala, I am doing everything I physically and emotionally can, to find a cure for his rare and progressive disease. You see, every day, I watch Trey. And his disease. Many days don’t have big bumps in the road, but his disease is progressive. So, to put it lightly, I watch his disease progress daily. I watch him struggle to learn skills that my other kids learn with ease. I have learned that singing catchy songs makes it easier to remember how to hold scissors or that the ability to draw horizontal and vertical lines is easier and is a skill that is acquired before the ability to draw lines on a diagonal. I have learned that when a child with Hunter Syndrome (aka. MPS II), like Trey, is diagnosed with severe carpal tunnel syndrome and his nerves may be permanently damaged by now, which means loss of muscle and function of the hand, his doctors may not do surgery because the build up of scar tissue due to repeated surgeries (Trey has already had one bilateral carpal tunnel release in 2008) may cause more damage than doing nothing. However, none of these decisions are made with certainty because of the rarity of the disease.

So, when people take a chance on us, they are doing more than just saying yes to giving up a night of their life. From a mum’s perspective, you are giving all the families with Hunter Syndrome (and other diseases Hunter Syndrome research will affect) hope. That their kids will one day learn to use scissors without having to break it down into songs, how to draw lines on a diagonal with ease, and without having to make an impossible decision to do surgery and potentially cause more damage or not do surgery and watch, over time, the complete loss of hand function.

Who’s taken a chance on us? Dirty Radio. Kid Carson. DJ Flipout. Chris Gailus. Britt Janyk. Will Blunderfield. All the actors on our Special Guests page. These are people who get numerous requests and among all those requests, have, for some reason, chosen to give up time for us. There are also the people who have been on board with us from the beginning of our fundraising, of whom there are too too many mention (although I will put in a special plug for Amy Beeman because although she’s been on board from the beginning, she’s helped me make a number of connections for this Gala that I would otherwise not have made. Thank you Amy!). There are also companies (who have people behind them) who have taken a chance on us: Shire Pharmaceuticals, Carats Diamonds, Whistler/Blackcomb, OOXX, The Sutton Place Hotel, and the list goes on. And then there are our volunteers, who are giving up time every week for our cause. Which blows me away. Everyone is busy. Yet, I have found people who are willing to get even busier, for our cause. I am so fortunate to have met you all.

I could write an essay or even a thesis on my gratitude to everyone who has taken a chance on us. You have no idea how touched I am by your donations of time, money, support, all of it. Thank you. Your generosity has become a part of me and will be with me for the rest of my days.

If Will Bluderfield performing isn’t enough, I found out on the very same day that Simon Ibell will be speaking at our event. Everyone will have different motives for coming to our event. I would go to an event just to see Will or just to see Simon. Both of them, and their philosophies on life are inspiring, and for me, life changing. Each of them, in and of themselves, is reason enough to attend this event.

When Trey was diagnosed, I cried. All day, every day, for weeks. And that is an understatement. I wished I had ceased to exist. I had no hope. All I saw was despair. During this time, my mom sent an email out to a member of the MPS Society who lives with Hunter Syndrome. He and his mom called her back within the hour. Then my mom called me, crying. But not with fear and sadness like we had been for weeks, with hope. She had talked to Simon Ibell & his mom, Marie. It is hard to share exactly what they said or how they said it, that was so inspirational, so I won’t even try to repeat it. All I knew, was that for the first time in weeks, I didn’t wish I could somehow not exist. For the first time, I had a reason to live.

Then a couple of monthes later, I got to meet them. Hunter Syndrome is a progressive disease. So, although Trey had just been diagnosed, he had relatively few symptoms. Before I met Simon, a mom who has a child with MPS warned me that because of the progressive nature of the disease, adults with MPS may appear ‘different’, and to be prepared for that. I think she was trying to protect me. However, all I recall seeing was hope and inspiration. Here was a living, breathing, wonderful adult with MPS II. Trey didn’t have to die as a child. Hope. Then Simon spoke. Inspiration. I walked away from that get together thinking that if Trey could be half the person Simon has become, I would be the happiest mom in the world.

When I was drowing and didn’t know how to live, Simon pulled me up for air. However, since getting to know Simon and people who know Simon, I have learned that he has this impact on many. People who meet Simon don’t forget him. Faced with more in a year than I or most people will ever face in a lifetime, Simon has responded with brilliance and brightness and strength and has lit a light in this world that will not be forgotten.

I am so excited and honoured that Simon will come to Vancouver to speak at our event. I can’t wait for the opportunity to listen to and learn from him again. Simon, thank you. From the bottom of my heart.

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