Global Television News Special

Hi Everyone,
I know it's a bit late but I just got the digital version of the following news specials saved to my computer and ready to upload.

Below you will find the Two-Part Global News Special on Andrew Lanese and Isaac. Please take the time to share with everyone you know. Andrew's story is quite touching and we are praying they get treatment soon. His story appears first. Most of you already know Isaac's story. Isaac's story appears second. The clips are very emotional when you see them one after the other.

Warmest,
A.

CHEX News Clip - CUTS FOR ISAAC!

As promised, the CHEX news clip from the event is below.
Enjoy,
The Isaac Foundation

CUTS FOR ISAAC! Raises over $2,000!

Hey Folks,

Just a quick update on today's event.

Thanks to the incredible effort of Jennifer McGuire at Styles by Jennifer, and the wonderful people at BoPeek Salon, the 1st CUTS FOR ISAAC! event raised over $2,000 for The Isaac Foundation.

The event was an amazing success. There were many local firefighters on hand to wash hair, which was hilarious (and wonderful!).

Isaac will be on CHEX news tonight at 11:00 (Channel 217 on Bell Express-vu) and tomorrow at 6:00 p.m.

The above picture is Jennifer McGuire, the organizer of the event. Below is Isaac and Sparky the Dog.

We'll update more tomorrow.

Warmest,

The Isaac Foundation

Isaac's Latest News Article

Hey Everyone,
Attached is the latest news article on Isaac. It appeared in the most recent edition of the Community Press. We'll try to update after our even on Sunday.

Warmest,
The Isaac Foundation

McFadyen Family Photo Gallery

Hi Folks,
Just a quick post today. I've been noticing a lot of visitors stopping by our Family Gallery that is part of our main site and thought I'd update things with some current pictures. The gallery can be found at www.theisaacfoundation.com/gallery. But you can also watch the video below. For the record, the quality of the video is a bit better from our site.

Warmest,
The Isaac Foundation

Back Brace and, Support Us Through United Way

"Everything always works out in the end. And if it doesn't, then it's not the end."

Hi Everyone,

Well, what can I say? What a week. A long, and difficult week. On Tuesday, we arrived at Sick Kids' for our "routine" appointment with the Orthopaedic Specialist to check on Isaac's back. We learned, very surprisingly, that Isaac's Kyphosis, or curvature of the spine, now requires him to be in a brace. And not just a regular back brace. This brace would cover him from neck to waist, front and back, and is a hard-plastic brace. It would prevent him from bending or twisting and would be required to be worn for 23 hours/day for many years.

We were quickly sent downstairs to have the mould made for his brace. Isaac was a trooper as they covered his entire body with plaster to make the mould. Being in a full-body cast certainly didn't take away his sense of humour! But, It was a very upsetting moment and day for us.

We had many conflicting emotions and wondered how we could possibly do this to our boy? How would this affect his quality of life? If he already has a shortened life-span, is this the best course of action? I want my child to have the happiest years that he can, and putting him in a hard-shelled, itchy, hot, and uncomfortable brace for the rest of his life doesn't seem to be something that is going to make him happy. And how will kids at school treat him? And strangers? Will this automatically change the person that he is?

During the last few, difficult days, I sent many emails back and forth to a writer-friend of mine. I told him that I was scared, which I truly am. He asked me what I was afraid of and my response was that I was afraid to live my life without my son. He responded very quickly and very simply. But his response picked me up and gave me the bit of strength that I needed to figure things out. He wrote "Don't worry. Everything always works out in the end. And if it doesn't, then it's not the end."

Anyhow, since Tuesday, we've been doing some digging, talking to other doctors, and doing a lot of research about this. Basically, we've realized that this course of treatment might not be the most effective.

After a long week, we have decided to wait 6 months and re-evaluate the situation at that time and we just received an email from our Dr. supporting our decision. You can never go wrong by putting things off. We'll see just how true this turns out to be in April. Thank you to everyone that has offered your support and words of wisdom.

On another note, as United Way donation time kicks into full gear, I just wanted to let perspective donors know that they can request that their UW donation go to The Isaac Foundation.

Simply write our charitable number in the "other charity" portion of your donation form and your donation will make it to our organization, through the United Way. There have been many generous people and organizations taking this approach and we truly appreciate it.

Our charitable number is 8069 300 79 RR0001.

I hope everyone is well. Please check out our website for our latest fundraising event, "Cuts For Isaac!" You can now order The Isaac Foundation Apparel from our website as well.

Warmest,
The Isaac Foundation

Open Letter To Kitchener-Waterloo Electorate

I know, I know...the election is already over! I thought I'd take a second and quickly upload a letter I wrote to the newspapers in the Kitchener-Waterloo region in support of our friend, Elizabeth Witmer.


We have plans to update the website soon. Sorry for the continued delays...life is crazy lately!


Warmest,
The Isaac Foundation


Dear Editor,

I feel I must begin this letter by stating that I am an outsider. I do not live in the area and, truth be told, have never even visited your beautiful region. In fact, I live more than 3 hours away in the small town of Campbellford, Ontario. However, I have actively watching the political debates across Kitchener-Waterloo since the beginning of the election and feel I am very well qualified to comment on the merits of your incumbent MPP, Elizabeth Witmer.

It has been a very long two years for my family, beginning with the devastating news that my first-born son, Isaac, was sick with a terminal illness called MPS VI. This disease is so rare that there are only 3 known cases in Canada and less than 1000 worldwide. Symptoms include a severely reduced lifespan, stiffening of the joints, mainly the knees, arms, and hands, corneal cloudning, spinal cord compression, and heart and airway disease. Upon initial diagnosis we learned that a life-saving treatment existed in the US but cost almost 1 million dollars per year.

In the beginning, all we had was Hope and, to be honest, we didn’t have much of that either. Having to deal Isaac’s initial diagnosis while continuing to lead our everyday life was a struggle that I do not wish on any parent. Moreover, struggling to understand our political system and secure provincial funding to save our son by searching for help from our local politicians was a stress that was almost unbearable.

The lessons I learned along the way to finding help for my son are vast. I learned that hard work and determination are sometimes not enough if the decision makers choose not to listen. I learned that political will is most often dictated by public pressure than by good policy. And I learned that “compassion” is a word more often quoted than actually experienced.

But Ms. Witmer unselfishly came along and took up our cause. She gave us Hope at the very moment when all seemed lost; and she gave us faith. I will forever remember our first meeting, sitting in her office at the Ontario Legislature. She listened to my plea for help with tears in her eyes and she told me that she was a parent too and that she was going to do everything in her power to help my son. That fateful encounter saved my son’s life and I can never thank her properly for what she has done.

Elizabeth’s determined work in the Legislature has allowed our family to Hope again for the future. While the Liberals did nothing to show their support for Isaac, and while the Liberals showed no remorse for our family situation, Elizabeth Witmer came to the rescue. She continued to push for our cause, knowing that waiting or doing nothing was going to drastically shorten my son’s life. Because of her relentless efforts in the Legislature, the Liberal government agreed to fund the treatment that my son so desperately needed to save his life.

Her kind, caring, and compassionate work changed public policy; something that I was continually told could never be done. Elizabeth changed my belief in the political system and showed me that it is possible for our elected representatives to make a difference in the lives of the people they represent. And that’s the very point I’m trying to highlight. Elizabeth Witmer is not even my elected representative! I had already approached my two area MPP’s, John Gerretsen and Lou Rinaldi, both Liberals. The only thing that came my way from them was delay after delay. Knowing that time was precious for my young son, I reached out to Elizabeth for the help and support that I needed. I researched her track record and realized that she had already worked tirelessly to gain funding for treatment for people affected by Fabry’s disease. Elizabeth came to the rescue of those individuals and she came to the rescue for our son.

Our family is indebted to Elizabeth for what she has done for us. She has changed our lives immeasurably and has given Isaac hope for the future. That's all any parent can ask for - Hope for their children's future. Although we can never repay her for her kindness and support, I hope that she’ll be available for us to send her a card when Isaac graduates from highschool. And I hope she’ll be around for us to send her Isaac's wedding photo, and the announcement of the birth of his first child. And I truly hope she’ll be available to speak at our celebration party when we make the announcement that we've found a cure for this horrible disease. No matter what the future holds, we have one for our son thanks to Elizabeth Witmer.

I am a Liberal but I believe that elections should be about the local people running for office in each of the ridings across this Province. As the election steams into its final week, I hope the readers in your area take the time to realize how truly wonderful their local representative, Elizabeth Witmer, has been for them over the past 17 years and reward her with another victory come Election Night.

Attached is a photo of Isaac, a photo that speaks volumes about what Elizabeth has done for him. It was taken during his first soccer game, a game that we weren’t sure would ever take place. It shows Isaac in his uniform, laughing to one of his new friends as he comes off the field for a break. Please remember that your local MPP played a big role in him being able to play soccer and, ultimately, live the normal life he deserves to have.

Warmest Regards,

Andrew McFadyen
613-328-9136
www.theisaacfoundation.com

Golf, A Relaxing Break, and Baseball...

Hello, Hello!

Our long awaited update is now underway. Sorry it's been so long. After working so hard on the golf tournament, we decided that it would be best to take a bit of time off and recuperate and relax a little bit before we get going again.

Our 2nd Annual Celebrity Golf Tournament was another great success for our Foundation. The tournament was a bit smaller than last year due to us putting most of our efforts on the RUN FOR ISAAC! event prior to the tournament taking place, but we still managed to raise over $12,000 for our Foundation.

Ellen did a great job setting up the silent auction, which was a nice addition to the tournament. We were thrilled to welcome Rob Baker from the Tragically Hip and The Honourable Peter Milliken, Speaker of the House of Commons. We are truly grateful for their support of Isaac and our Foundation.

Following the Golf tournament, Ellen and I took a bit of time off. Of course, we couldn't go far due to having to be at Sick Kids' ever Tuesday for Isaac's treatment, but we did manage to escape to Niagara-on-the-Lake for a 2 day Golf Holiday.

As things were in full swing for the Golf tournament, my sister Alesha McCabe was working tirelessly with her committee to organize a Baseball Tournament to support The Isaac Foundation. She began planning way back in January for the event, which just took place this past weekend.

And What a job she did! I was so proud of her! Numbers are just rolling in, but she managed to raise close to $6000 with her hard work and determination. Isaac, Ellen, Gabriel, and I had a great time being a part of the tournament and it was amazing to meet such kind, caring, and considerate people.

Two teams brought in extra pledges with their registrations and we truly thank them for their support. Isaac made a lot of new friends and he's pictured here with just a few of them.

In the photo on the right, Isaac is sitting with Chuck the DJ! During the pre-dance preparations, Isaac and Chuck struck up a friendship that lasted the whole night through! Chuck was so kind and patient to Isaac and showed him how to use all of the mixing equipment. Isaac sang into the microphone to his favourite John Mayer songs while Chuck and his friends helped him change songs, turn the volume up and down, and generally have a good time.

We'll try to update again soon. Just thought I'd send a quick entry with some news while I got the chance.

Again, thanks to everyone that participated int he Golf Tournament and the Baseball Tournament. Please know that all dollars raised goes directly towards research and that your efforts will get us closer to finding a cure for Isaac.

Warmest,

The Isaac Foundation

CKWS News Clip

As promised, here's the video of Isaac's latest news appearance. It should be active soon (sometimes Youtube takes longer than expected). If the clip doesn't work just try again a bit later and it should be active.

Warmest,
The Isaac Foundation

Isaac's First Soccer Game, More Civitan Support, and Celebrity Golf...

Hi Everyone,

Seems like I say this everytime I'm updating the website and blog, but it's been very busy around the McFadyen household over the past week or so. But it's been a good busy, as always!

Isaac started his first soccer game last Tuesday and was adorable! He wasn't interested in playing soccer at all, but that wasn't a surprise to us. He'd been telling us that he "just wanted to to watch" and not play.

Well, that's just what he did! Actually, he has found a new best friend in his coach, Rob. Isaac figured out that his coach was the guy in the "red hat" and proceeded to follow him around for the entire game. In fact, we don't really have any pictures of Isaac's first soccer game that Rob isn't a part of! The photo above illustrates how the game went, for both Isaac and Rob.

It was an incredible feeling, watching our son out there with other kids, being part of his first team. And we didn't have to worry about him being different from other kids. We didn't have to worry about the fact that he was the smallest kid on the field. We didn't have to worry about people looking at him as being special in any way at all. And it was nice that his coach, Rob, seemed to enjoy his company as much as Isaac did his. Rob is the first person in Isaac's life, outside of his friends and family, that has the potential to have a lasting impression on him. And hopefully there will be many more like him in the future. More coaches, school teachers, custodians that will have an impact on his life and help guide him through his day to day activities. What a great feeling that is for any parent.

Guess it should be said that Isaac did get a chance to play goal near the end of the game. Of course, Rob had to take him down there and show him how, but he did it and played the rest of the game in goal! And we're lucky that Isaac gets to play on the same team as his friend, Evan, who is pictured below. Both of them love to socialize, so Tuesday nights will be a great time for them to visit each other...

On Thursday, Ellen, Isaac, Gabriel, and I were back in Kingston for another cheque presentation from the Civitan Clubs. After my first presentation to the organization, I was asked to speak at their East Region Convention, which I was very happy to do so. The audience was so kind and caring, and they received my presentation and our Foundation very well. Each club went back to their membership and asked for donations which resulted in the cheque presentation on Thursday. In total, we were given $6800 from Civitan members, an amount that is very generous, heartfelt, and heart-warming.

The media were there to record the event for the Kingston news and we had the opportunity to be interviewed afterwards. We still haven't seen the final result but I should have access to a copy in the near future. We'll upload the news clip once we get the opportunity.

We want to take this chance to thank the CIVITAN members for their tremendous support and encouragement over the past few months. Their organization truly makes a difference in the communities they serve and we are so fortunate to have had the opportunity to be supported by them. They will play a big role in our finding a cure for Isaac and I look forward to having Civitan members celebrate with us once we realize our goal.

As far as the golf tournament goes, we're still working away at getting silent-auction items donated, teams signed up, and doing everything involved with organizing a successful tournament. Rob Baker of the Tragically Hip will be joining us at the event, as will Peter Milliken, the Speaker of the House of Commons. And of course, Isaac and Gabriel will be on hand to welcome all the golfers to the event and will be travelling from team to team during the day to visit with them, shoot photos and, possibly, putt one in for each team!

If you're interested in joining us for the day, please let us know via email. We'd love to have you attend!

Guess that's it for now.

The Isaac Foundation

Successful Run, Heart News, Don Cherry, and Golf...

Hi All,

Well, it's been a very busy and successful week or two for The Isaac Foundation. Our RUN FOR ISAAC! event at the National Capital Race went very well. Because of our status as a Destination Charity for the event, we received a booth at the Pfizer Health and Fitness Expo. It was a great opportunity to meet people and inform them about Isaac, his disease, and our Foundation because over 30,000 people go through the Expo ever year. We sold a lot of our Isaac Foundation Apparel and took donations from the public to support our run. It was a great event to be a part of and we Thank the organizers for making it such a successful expo.

Race Weekend was truly awesome! Our Run For Isaac! team did very well, some posting personal bests for their times, some running in the full marathon for the first time, some (including me!) running the 1/2 for the first time, and some running for the first time period!

It was an incredible commitment for our runners to make and we truly thank them for their efforts! Everyone worked hard to canvass for pledges, promote our foundation and, of course, train for their races. My family drove the 6 1/2 hours for the trip, ran in the race, helped out at the booth, looked after Isaac and Gabriel while Ellen and I raced, and didn't complain the whole time!

It was really nice to be able to meet new people and bring together a group that cares truly and deeply about our son. They want to make a difference in his life, and the life of others affected by this disease, and it was overwhelming to have their support. Runners that came out will now be life-long friends and we look forward to getting to know everyone well over the coming years.

Initial figures suggest that we made close to $10,000 for the Foundation, money that will go directly towards funding innovative research projects that aim to cure this disease. Thank you to everyone for their tremendous effort!

After we returned from Race weekend, Isaac had treatment on Tuesday and an appointment with the Cardiologist on Wednesday, both at Sick Kids' in Toronto. Treatment went well and we learned that Isaac grew another cm. To most this isn't big news, for our family this is incredible!

The cardiologist told us that Isaac's ventricle is still enlarged, and more so than last time we were there. This happens because of his heart-valve prolapse and the blood shoots back into his ventricle as it moves through his heart. In an effort to control the enlargement, Isaac has now been placed on blood pressure medication. Ideally, this prevents the ventricle from growing. We'll update more on this when we know more.

One of the apparel items that we had made up in addition to our hats, t-shirts, hoodies, and golf shirts, is a hockey jersey. And they look incredible!! I wore it to school one day (a crazy, hot day no doubt) and it was a huge hit. A friend of mine suggested that we make one up for Don Cherry and send it along to see if he can wear it on Coach's Corner. So we did! And it looks great. We put his name on the back and gave him Bobby Orr's #4. Now we're just working on getting it out to him in time for the Cup finals in Ottawa. We've been working away at this idea now for a while and we're hopeful that he'll be able to wear it. Pictures of the jersey for Don are posted below the rest of the pictures of the runners (speaking of photos of runners...sorry we didn't get a shot of everyone. I hope it's understandable! We' had so many runners, not enough time to shoot everyone!) If you have photos of the event, please send them along and I'll try to put a photo album together for everyone and upload it to the main site.

Finally, we're madly working towards our 2nd annual Celebrity Golf tournament. The event takes place on June 23rd at the Inverary Golf Club near Kingston, Ontario. Cost is $500 per team, which will include a $75 charitable receipt, golf, cart, lunch, dinner, and prizes for each participant. Please send us an email if you'd like to register your team as spots are filling up fast!

As promised...here's the Hockey Jersey for Don Cherry! Hopefully he's interested in wearing it. We've got a lot going for us! They're Bruin's colours, Bobby Orr's number is on the back, The charity is for a little boy, We're from KINGSTON!, and they really are beautiful shirts. GO DON!

Guess that's it for now. We'll try to update again soon.
Warmest,
The Isaac Foundation

Civitan Support, Isaac's Update, and Busy Times...

Hi Everyone,

As usual, things have been incredibly hectic around home. We're both very busy working on Foundation events, planning for the National Capital Race in Ottawa, looking for sponsors for the Celebrity Golf Tournament in June, updating websites, emailing families, and delivering presentations on behalf of the Foundation to different organizations.

One such organization that we've been delivering presentations to is the Civitan. Our journey with Civitan began a few months ago when a Civitan Club member in Kingston heard an interview I did on the radio. She asked me to attend the Kingston Civitan meeting to talk about Isaac, his disease, and our Foundation. The assembled crowd was wonderful, and they received my message with empathy and tremendous support. From there, we were asked to present to the Eastern Region Convention in Arnprior, where clubs from Eastern Ontario and Quebec sent representatives. Again, I was overwhelmed by the support we received from the members and we thank them from the bottom of our hearts for their words of encouragement and their vow to inform people about rare diseases, such as the one that Isaac is suffering from.

A highlight from the Civitan Convention came when one member, Bill MacAdoo, sacrificed his body to support our cause. He took donations from the assembled group in exchange for waxing his body! To top it off, he got a piercing as well!!! We truly appreciate his support and want him to know that his efforts haven't gone unrecognized. Please CLICK HERE to hear a message of Thanks from Isaac for Bill's selfless act. And CLICK HERE for a quick news article about the event.

The RUN FOR ISAAC! event is quickly approaching and we're working on ordering clothing to sell at our booth at the Pfizer Health and Fitness Expo. So far, we've ordered some Orange Hoodies, more hats and T-Shirts, some kids hoodies, and some spring/fall jackets. In addition, some Hockey Jersey's are being made for us as well. Of course, all of these items are available for interested purchasers. We'll do our best to get some photos of the items up as soon as we receive them.

As far as Isaac's health update goes, we got some good news regarding the kyphosis in his spine...it's not as bad as had previously been reported. We're quite relieved about this and will continue to monitor him closely. But his heart murmur is getting worse, and we're concerned that his growth hasn't continued to speed along as it did at the beginning of his treatments. Again, this will all be monitored and we'll update more as soon as we have details.

The Celebrity Golf Tournament is in full swing and we're actively searching for silent auction items and signing teams up. A registration link will be posted soon, as will details for the event. What has been set is the date...JUNE 23rd at the Inverary Golf Club near Kingston, Ontario. Let us know if you want to be part of the event ASAP because spots are already filling up fast.

That's it for now. We'll try and update again soon.

See you in Ottawa!

The Isaac Foundation

Updates, More Media, a Wonderful Concert, and Busy Times...

Well, time for a long awaited update on how things are going. We've been incredibly busy. Working all day, doing Foundation business, planning events, travelling to and from Toronto for treatment, and doing the small things in life have really been exhausting us of late. We never seem to find the time to return email or telephone calls. And when we do, they keep coming!

Our Application deadline is quickly approaching and we've received some grant requests already. We're looking to give out a two year grant in the range of $80,000 - $100,000 and can't wait to get the process of reviewing applications started. It feels good to be able to be part of finding a cure for Isaac and other children affected with this disease. We'll keep working to put more money into innovative projects. We know this will make a difference in Isaac's life. A few years of exhaustion is a small price to pay.

Isaac appeared in two newspaper articles last week, both of which are available in our Media section of the website. They were fairly well done and it's nice to continue to get media interested in our cause. You never know who's watching...

We got Isaac's MRI results back. They were looking at his spinal cord compression and the results of the decompression surgery he had last April. Things are great as far as the compression goes, but unfortunately his kyphosis (curvature of the spine) is getting worse. And ERT doesn't help with skeletal problems associated with this disease. It was a tough few days when we found out that it's getting worse because it brings us back to reality quickly. It's easy to know that treatment is helping Isaac's symptoms but we have to remember that ERT is not a cure and we must find better treatment options soon.

We'll be sent to see an Orthopaedic Specialist to track the changes in his spine. In the near future, Isaac might have to wear a back brace. In the coming years, it might mean implanting some rods in his back to stabilize his spine. Not something we're looking forward to for him, obviously.

And Isaac will be receiving a dosage increase for his ERT beginning next week. Hooray! This means he's gaining weight and needs a higher concentration of the enzyme his blood is lacking. Hopefully this will lead to another growth spurt.

Planning for the Race Weekend in Ottawa is going well. Our team is growing and we're hoping to raise a lot of money through the event. Check out the Events link for more info. While we're writing about events, we want to thank Kim Duca for organizing and performing at a wonderful Benefit Concert for Isaac that took place in Kingston on April 22nd. It was a beautiful night, with some great performers giving their time for our cause. And thanks to everyone that attended, we truly enjoyed ourselves.

Our golf tournament has been scheduled for June 23rd and there has already been intense interest from teams. If you know that your team would like a spot in this year's tournament, please email us ASAP so we can reserve a spot for you. Cost is $500 again, which includes golf, carts, and dinner for a team of 4. We will again be holding a silent auction and all golfers will receive a prize package at the event.

On a last note, check out our FACEBOOK group, if you're on the ever-addicting networking site.

That's it for now. We'll try to update again very soon.

Take Care,

The Isaac Foundation

NIH Conference Recap

I have now returned from the NIH sponsored Scientific Conference on MPS Diseases in Washington, DC. It was definitely worth the travel (9 + hrs. each way) and out-of-pocket expense.

I was a little intimidated as I attended the evening reception the night prior to the two day conference. The room was filled with highly educated researchers and doctors, and a handful of parents that I had never met. But by the time I left that evening, I had spoken at length with two of the leading MPS researchers in the world. These researchers are the equivalent to any celebrity in my mind…I’ve been reading about their work since the day Isaac was diagnosed. I had the opportunity to ask them about their research specific to MPS VI, and discuss our foundation and first grant. I was totally amazed. And the conference hadn’t even begun!

So the next two days were filled with presentations and discussions by the leading researchers and medical doctors from all over the world. Each of the researchers presented their current work, much of which hasn’t been published yet. Then the other scientists asked questions, provided suggestions and occasionally criticism. It was all very interesting, and very impressive. The amount of intelligence in that room was exhausting, and it took every ounce of concentration to try to follow along. (Notice I say try).

Some of the highlights included a presentation by Dr. Fran Platt, which partly focused on the secondary problem of inflammation with lysosomal storage diseases. She found that mice who were given NSAIDS (non steroidal anti inflammatory drugs) and Vitamins E and C (antioxidants) lived significantly longer than those with no treatment. This wasn’t specific to MPS VI, but there is growing evidence that an immune response contributes to some of the pathological problems with MPS diseases, and therefore this treatment should prove of benefit in combination with other therapies. Further studies are needed, but at least in the interim we look into geting Isaac on some NSAIDS and vitamins. You can read one of her papers on the subject here.

I also learned that Dr. Hopwood is beginning clinical trials in Australia injecting ERT into the hip joints of patients with MPS VI. The idea is that it should help get the enzyme into the bone and joint more effectively than intravenous ERT, which due to the limited blood supply to the bones doesn’t help much with bone problems. Dr. Hopwood also had a paper about to be published which analyzes the blood, urine and gene mutation of MPS VI patients, and predicts the clinical course of disease progression. This is the first of its kind, and I’m anxious to get my hands on it in the coming months. (We also expect to get the results of Isaac’s gene mutation analysis back from Australia in April.)

There were numerous presentations on gene therapy, mostly with animal models, using a variety of vectors and techniques. Some are further along than others, and it looks like there may be a clinical trial underway for MPS III as early as 2008 in Europe.

Overall, the conference was so encouraging. Not only did I get to meet all of these researchers and doctors face to face, hand out our Request for Applications for our first grant in person, and learn about the progress being made that will hopefully one day save our son – but it was also so promising to see these doctors collaborating, sharing information and advice, advancing the field of MPS diseases and treatments. It reaffirms my belief that one day we will have more options for treatment for Isaac, that he will be able to lead a much longer and better quality of life than most had initially thought possible.

A Long-Awaited Update...

Hi All,

Sorry it's taken so long to update our blog. We've been swamped with planning for the National Capital Race, Preliminary planning for The 2nd Annual Isaac Foundation Golf Tournament, work, and life in general!

Race Weekend preparations are going very well. We have a lot of people that will be running the race for us and we are confident that we'll reach our goal of $20,000. We'll update more soon but if you know of any runners or walkers that would like to participate in any of the races to support The Isaac Foundation, send them our way ASAP.

Since our last update, Isaac has grown another 1/2 inch, which puts his total growth at 2 1/2 inches since ERT began. It's incredible to know that his treatment is working. Trips to Toronto are becoming a normal part of our lives and we're grateful that Ellen's mother, Paula, can make the trips with us on a weekly basis.

Also since our last post, we received a comment on one of our blog entries about BioMarin, the drug company that makes the treatment that Isaac receives. We have often talked about how frustrating it was to try to deal with this company, and about their unwillingness to work with families and provide support when we need it most. The comment we receieved was basically defending the drug company for their actions (or inaction, in our view) because BioMarin is a small organization and just beginning to make money.

I don't find this to be a valid point for a variety of reasons. A bit of work and support on their behalf would have had many positive reprocussions for the company and would have made our very difficult and painful journey easier to handle. But we were left alone to fight our battle for approval of the drug in Canada and we were left alone in our battle with the Provincial government for funding. In the end, BioMarin got what they wanted - their product in Canada without having to apply for approval (at a high cost to them) AND provincial funding for a lifetime supply of their product. And they didn't have to do any work! Sweet deal for them.

Of course, we would do it all over again of we were forced to. Our children are our life and we would fight forever for them. But again, a bit of help from BioMarin would have made our ordeal easier and it would have provided them with a warm news story to promote. And they could have felt good about their patient-friendly company and could have advertised how important working with families is to them. Too bad.

In the past week, we've had contact with two other families that are affected with MPS VI. One woman is in Belarus and is 30 years old. She's currently working on her PhD and still awaiting treatment. The other boy is 7 years old and is located in Portugal. He's also still awaiting ERT and we're thinking of them often. We hope their governments will begin to support them and help them get the treatment they so desperately need. It makes us feel fortunate that we live in Canada, where there is potential to change government policy.

Our friends in BC, the Purcell's, have also started treatment! Trey has had two treatments now, and they are getting some great media attention. Please stop by to visit them at www.treypurcell.com and sign the guestbook with your congratulations and support.

In March, Ellen and our Foundation treasurer, Lynn Gallupe, will be heading off to Washington for the NIH sponsored scientific conference on MPS Diseases. The top scientists and researchers in the world will be on hand to present their projects. It will be an opportunity for us to find out where the most promising research is being completed and give us an idea as to where we would like to direct our research dollars. It will also give us an opportunity to give some researchers information about our Foundation and about our grant application process.

We've just finished drafting our Request for Applications and will be sending it out to grant candidates soon. We hope to provide an $80,000 or $100,000 grant in the spring.

That's about all for now, although I'm sure there's more to update. Remember, if you know of any runners or walkers that would like to participate in the National Capital Race for The Isaac Foundation, send them our way ASAP!

The photo above was shot last month. It's Isaac with his brother Gabriel. They are so cute together!

The Isaac Foundation

RUN FOR ISAAC!

Hi All,

Well, things have been going very well over the past few weeks. It was great to see Isaac's feature in the Globe and Mail again. In addition, we've got some great response from the article that appeared in the Kingston Life Magazine. We'll try to get the PDF files of that article to upload to the website.

We've just begun planning and advertising for The Isaac Foundation's "RUN FOR ISAAC" event at The National Capital Marathon. The event takes place on May 26th and 27th in Ottawa and we need a lot of runners and walkers to help us reach our fundraising goal!

You can walk or run the 5KM, 10KM, 1/2 or Full Marathon and canvass for pledges to The Isaac Foundation. If you know somebody that is already planning on attending, send them the link to our website and tell them about our cause.

More information can be found on the main site (www.theisaacfoundation.com). Pledge forms are also available there as well.

That's it for now,

The Isaac Foundation