26 Sep 2010

Sticky Post By mcfadyena Posted in Advocacy, Media, Newspaper Permalink

Campbellford Parents Fight For A Cure

Sticky Post By mcfadyena On 26 September, 2010

Sep 26, 2010

Ron Sexsmith to play Cobourg MPS VI benefit

The McFadyens

Paul J. Rellinger / The Independent

TRENT HILLS — Gabriel McFadyen, 4, left, Ellen Buck-McFadyen, Andrew McFadyen, and Isaac McFadyen, 6.

Northumberland News

ByMoya Dillon

CAMPBELLFORD — Andrew and Ellen McFadyen are great examples of the lengths parents will go to for their children.

Their son Isaac, now 6, was diagnosed with MPS VI at the age of 18 months, an extremely rare disease caused by an enzyme deficiency. Since then, the couple has successfully lobbied the government not only to bring the previously-unavailable therapy called Naglazyme to Canada, but also to pay for the expensive treatments, which can run anywhere from $300,000 to $1 million per year. They also founded the Isaac Foundation to raise money in support of ongoing research into MPS, which currently afflicts only five known individuals across the country.

“Because it’s ultra-rare, it makes it hard to lobby governments,” Mr. McFadyen explained, noting a lack of data and studies due to the small population of affected individuals hampers efforts.

“Today we are happy we have that treatment. We call it his lifeboat because it slows the progress of the disease, but it’s definitely not a cure. He has a lot of limitations still.”

Those limitations include not being able to lift his hands above his head, as well as ongoing heart issues and joint stiffening. Isaac’s growth has also effectively shut down, leaving him smaller than other children his age and he must miss one day of school per week to travel to Toronto’s Sick Kids Hospital for treatments, which constitutes a 12 to 13 hour day for him and the rest of the family, including younger brother Gabriel.

The Isaac Foundation has raised $240,000 since its inception in 2005 and is currently funding two research projects, one in New York and one in Australia. Similar projects typically take between 15 and 18 months to get off the ground and the McFadyens try to get out funding as quickly as possible.

“When we receive a proposal, it’s sent to our Medical Advisory Committee right away to evaluate whether or not it has merit,” Mr. McFadyen explained.

“It’s typically one month to at most two before they have their funding. We often feel like we are racing against time with this disease and getting the money out quickly is important. We want to make sure those projects that look promising get started as quickly as possible so they can have the most impact.”

Mr. McFadyen said the family is especially excited about the possibility of one of the research projects entering clinical trials within one year, with Isaac signed up to participate. That type of opportunity wouldn’t have been possible without the support the charity has received over the years, he explains, including public support from celebrities such as John Mayer and The Tragically Hip.

“We wanted to play a part in finding a cure for our son,” said Mr. McFadyen, who is also a full-time teacher, of the decision to create The Isaac Foundation.

“We didn’t want to look back and think we could’ve found a cure if we’d only spent more time on this. We throw everything we have into learning about this disease and finding a cure as a family. It’s definitely been a steep learning curve but when you have something as important as your son on your mind you just do it and you do it happily.”

The gala in Cobourg is one of the organization’s first events close to the family’s Campbellford home.

“We’re excited because we hope it will be a really incredible community experience,” Mr. McFadyen said of the gala, which will include an intimate performance from Ron Sexsmith and a silent auction that includes items such as a guitar signed by Isaac and John Mayer.

“This is our first event close to home and we always did that on purpose because home was supposed to be our refuge from all this, but we’re okay being at home and working on this. This event’s exciting because it will bring everyone together. We feel like we’ve been successful so far, but in the end we still haven’t found a cure for Isaac, and that’s the goal.”

The Gala For a Cure, featuring Ron Sexsmith, will be held Friday, Oct. 1 at the Best Western Inn and Convention Centre in Cobourg at 6 p.m. Tickets are $100, with a $60 charitable receipt and include dinner, entertainment and wine tasting courtesy of Black Prince Winery. Tickets are available by calling Ms. McFadyen at 705-632-0983 or visiting www.theisaacfoundation.com. They can also be purchased at Eclectic Mix in Warkworth and the Best Western or Mortgages For Women in Cobourg.

16 Sep 2010

Sticky Post By mcfadyena Posted in Media, Newspaper Permalink

Gala Will Support The Isaac Foundation

Sticky Post By mcfadyena On 16 September, 2010

By Jeff Gard, Northumberland Today

Thursday, September 16, 2010 9:00:00 EDT AM

COBOURG — A fundraiser will be held “at home” for a local foundation, and the disease it supports, which has gained national and international attention.

Formed in 2006, The Isaac Foundation was created to fund innovative research projects that aim to find a cure for MPS VI (Maroteaux Lamy Syndrome). MPS VI is a rare, progressive disease that affects only four children in Canada.

Six-year-old Isaac McFadyen of Campbellford is one of them. Symptoms include stiffening joints, stunted growth, heart and airway disease, spinal cord compression and a shortened life span.

The Isaac Foundation will host its first Gala for a Cure on Oct. 1 at the ballroom at the Best Western Cobourg Inn and Convention Centre. In the past they’ve hosted golf tournaments (usually near Kingston) and other events, many times initiated by people wanting to support the cause.

“I think it’s now time to do more stuff at home,” said Isaac’s father, Andrew McFadyen, who is a director for the foundation. “We’ve been going for six years on the foundation and we like to continue to rejuvenate ourselves and hold different types of events.”

Tickets for the gala, which will include wine tasting by Black Prince Winery, dinner, an intimate performance by Canadian singer/songwriter Ron Sexsmith and a silent auction, are on sale now.

Tickets are $100 and include a charitable tax receipt of $60. They can be purchased by contacting Ellen Buck-McFadyen at 705-632-0983 and ellen@theisaacfoundation.com . Tickets are also available through Marcy Berg at Mortgages for Women in Cobourg, and at The Eclectic Mix in Warkworth.

Andrew McFadyen was thrilled to announce Sexsmith was added to the gala lineup.

“I’m excited that we get to treat our guests to the music of Ron Sexsmith,” he said. “It gives us a boost with our fundraising efforts and really helps us pave the way for a successful event.”

Sexsmith isn’t the only musician to lend a hand to The Isaac Foundation. Both John Mayer and The Tragically Hip have donated signed guitars to be auctioned off at the gala. The charity has an excellent relationship with Mayer, who raises awareness of the organization during his concerts and on his website and meets with young Isaac prior to his Toronto shows.

The Tragically Hip have regularly attended other Isaac Foundation events.

Isaac’s story first garnered national attention in 2006, when the McFadyens lobbied the Ontario government to fund treatments for Isaac. While there is no cure for MPS VI, a type of Enzyme Replacement Therapy (ERT) called Naglazyme was approved in the United States in June 2005. The cost for treatment, though, runs between $300,000 to $1,000,000 per year.

Elizabeth Witmer, who was the Conservatives opposition health critic at the time, invited the McFadyens twice to the Ontario Legislature. And in July 2006, the family received word from then-minister of health George Smitherman that the provincial government would fund Isaac’s ERT treatments.

“Without treatment, there wasn’t any hope,” McFadyen said. “Our Liberal government had the chance to alter the life of my son.”

McFadyen ran last year to become the local Liberal MP candidate for Northumberland-Quinte West (which was won by Kim Rudd). He gives credit to members from two parties for the funding of Isaac’s treatment.

While they’re thankful for the work of the Liberals’ Smitherman and local MPP Lou Rinaldi, the family is indebted to the lobbying of Witmer, who’s expected to be in attendance at the gala as well.

“Every milestone Isaac reaches, I still send her a picture of him,” McFadyen said.

Research for this ultra-rare disease can cost about $100,000 each year to run one project with one researcher full time, McFadyen pointed out. The goal of the foundation is to just raise as much money as possible.

“We’re proud of the fact 97% of the money that comes in goes right toward research,” McFadyen said.

For more information, check out The Isaac Foundation website at www.theisaacfoundation.com.

Watch for more about Isaac’s story.

jgard@northumberland today.com

twitter.com/NT_jgard

27 Jun 2010

Sticky Post By mcfadyena Posted in Media, Newspaper Permalink

Little Man Has Doc's Heart

Sticky Post By mcfadyena On 27 June, 2010

Bonded by baseball, Halladay and McFadyen family hook up for a weekend to remember in Philadelphia

BOB ELLIOTT, TORONTO SUN

FIRST POSTED: SUNDAY, JUNE 27, 2010 10:48 PM EDT | UPDATED: SUNDAY, JUNE 27, 2010 11:36 PM EDT

PHILADELPHIA – As usual when batting practice ended on Saturday the Philadelphia Phillies headed for the first base dugout.

Some couldn’t wait to get inside to the air-conditioned clubhouse.

Others headed to the video room for one final look at Jays pitcher Shaun Marcum and others wanted a Red Bull.

“You could see Roy Halladay walking across the infield, deep in his mode of concentration, and then he saw Isaac,” said Andrew McFadyen. “Roy’s face lit up … and so did Isaac’s.”

For the next 15 minutes Halladay stayed on the field with Isaac, 5, his younger brother Gabriel, four, and parents Ellen Buck-McFadyen and Andrew McFadyen, of Campbellford, Ont.

Halladay, his wife Brandy, and young Isaac have been pals for a few years since Isaac arrived at the Rogers Centre in Doc’s Box one weekend afternoon from Sick Kid’s Hospital.

You know about Halladay, his wins, his strikeouts, his complete game and bringing groups to Rogers Centre and Citizens Bank Park,

You may not know a lot about brave young Isaac.

At 18 months, in November of 2005, he was diagnosed with Maroteaux-Lamy Syndrome, or MPS VI. The unfair disease is caused by an enzyme deficiency, which stunts growth and causes joints to stiffen and heart valves to fail.

Isaac’s health is as good as it has ever been up to this point, according to his father, who says Isaac’s growth is progressing at a slower pace, but he has more mobility in his shoulders of late.

Treatments at Sick Kids, where he gets a weekly enzyme-replacement therapy, were moved up because of the G-20 Summit this past week. The treatments are Isaac’s lifeboat until a cure for his disease is discovered.

Isaac gets a synthetic version of the enzyme lacking in his blood.

The door-to-door process from Campbellford takes about 12 hours and comes in at a cost of about $500,000 to

1 million a year. The McFayden family credits Christina Blizzard of Sun for helping get government approval.

“I can’t speak more highly of Roy and Brandy,” Andrew McFadyen said from his downtown Philadelphia hotel.

“They are class acts, kind and caring. They truly go out of their way to make the world a better place for those around them. They use their position to give back and I think that is what makes the Halladays so amazing.”

The McFadyens arrived in town at 1 a.m. Saturday making the 81/2 hour drive from Kingston where McFayden teaches, missing Halladay’s seven scoreless innings for the win Friday. McFadyen was on a class trip Friday and could not get away earlier to get to Philadelphia in time for Halladay’s start.

And early Sunday morn they were on the road home.

In the Phillies clubhouse on Sunday, Halladay walked past us with the purposeful stride.

“Do you have a minute?”

“Nope, I’m way behind, running late, sorry, no time,” Halladay said over his left shoulder without breaking stride.

“Ah, it’s about Isaac.”

Halladay put on the breaks like a runner leading off first who sees a line drive at the shortstop’s head.

“It was nice to see him for the first time since last season and he looked great, which is a real good sign,” Halladay said. “He’s always been energetic, he told me he was a better pitcher than I am, but he needs some more practice.”

Brandy Halladay set up the tickets and the on-field passes for the McFaydens. They were on the field for 45 minutes and centre fielder Shane Victorino stopped by encouraging Isaac to heave balls on to the field during batting practice.

“Isaac gave me a high-five, as always, and stung my hand,” Halladay said. “Like last year when he came out of the first base dugout (at the Rogers Centre) over to our dugout.”

In 2008, Halladay was presented the fifth annual George Gross/Toronto Sun Sportsperson of the Year – the first pro athlete to win the honour. Legendary former editor Lou Clancy presented Halladay a $1,000 cheque last April before the Jays played the Detroit Tigers.

Halladay donated the cheque to the Isaac Foundation (theIsaacfoundation.com) and matched it himself.

After a big on-field hug on Saturday, Halladay squatted.

Isaac pitched to the gangly catcher in front of the Phillies dugout Saturday afternoon. That was Isaac’s favourite part of the visit, according to his father.

Isaac presented Halladay with his custom-made Isaac Foundation softball jersey with No. 32 on the back, the number Halladay wore with the Jays. When Isaac realized Halladay was wearing

No. 34 with the Phillies, he told his favourite player: “Just add two more.”

Isaac and Gabriel watched Halladay open and then read the card they made for him at the Sick Kids last week …

It was Halladay pitching … an orange.

After Halladay’s perfect game 1-0 win over the Florida Marlins, his e-mail in box was full with well wishers and people sending notes of congrats.

One e-mail stood out:

“Congratulations, enjoy everything that’s coming to you this evening.

From the McFaydens.”

Halladay answered the e-mail.

“We’ve been in contact with Brandy all the time and she often sends notes to Roy,” said McFayden, who had seats behind the Phillies dugout. “We don’t get to see him on TV for the Jays any more, but we listen to games on MLB network.”

Halladay also keeps in touch with Sean Clayton, who he met through the Make A Wish Foundation.

The Jays beat the Phillies 5-1 Saturday in the McFayden’s lone game in Phillie.

“Mostly, Isaac was impressed how hot it was during the game,” McFayden said.

While McFadyen lives in Campbellford, he teaches at Winston Churchill Public School in Kingston. In the efforts of full disclosure, it is a school we attended for two years and never once skipped class: Kindergarten (Miss Preston) and Grade 8

(Mr. Neil Joynt).

“Brandy and I believe in the Foundation,” Halladay said. “There is not really a lot of awareness for the illness.”

Deep friendship

In April last year we remember asking Isaac his favourite player at the St. Louis Bar and Grill before Isaac made his way across to the Rogers Centre.

Isaac stood tall, threw his neck back and as if howling at the moon, to let out a loud yell:

“Royyyy Holl-A-DAY!”

However, you pronounce the pitcher’s name, Halliday.

Halladay and Isaac have a deep friendship unchanged by the either the colour of a uniform or a city.

bob.elliott@sunmedia.ca

27 Jun 2010

Sticky Post By mcfadyena Posted in Media, Newspaper Permalink

Little Man Has Doc’s Heart