The party was originally planned as a ‘small’ fete for fans attending the first Stargate convention. Much to the surprise and delight of all involved, attendance exploded the following year in 2001 when ‘Sekh’s Party – The Second Coming’, decided to donate proceeds from ticket sales and auctioned items to the Canadian Cystic Fibrosis Foundation. JR appeared as a special guest and was absolutely amazed at his fans’ generosity and the amount of money raised. The event held at Vancouver’s Planet Hollywood, was the second largest single event and largest fundraiser (organized independently of the Foundation) for CCFF BC in 2001, with $6565.00 (CDN) in total donations and an additional $12,000 (CDN) donated by fans via JR’s official website. Several hundred dollars were also donated to the 9/11 charity. Sekh and crew held their third annual gathering, affectionately dubbed “Close Encounters for the Third time,” at Vancouver hot-spot Maverick’s on the Waterfront. The event sold out in just five months and was a smashing success, raising $17,000 (CDN) for CCFF and $1200 (CDN) for the Twin Towers Orphans Fund. According to Sekh, a total of $30,250 (CDN) was raised for CCFF from party proceeds and other fundraising activities, including the sale of a charming new children’s book, “Yummy Yummy Nummy Nummy, Should I Put This In My Tummy?,” featuring tales of Madison and written by JR’s sister, Kim. A portion of sales proceeds will go towards finding a cure for CF. Sekh’s Party is no longer simply just a social event for members of the fandom, but has become an important and meaningful charity fundraiser. Partygoers especially appreciate the opportunity to help those in need while having a blast with friends.
Through their admiration for JR and his work, his fans have come to embrace his niece, her courageous fight for life and have dedicated themselves to fighting by his side from across the globe. I had the privilege to speak with JR about his involvement with the Canadian Cystic Fibrosis Foundation (CCFF), Sekh’s Party and ‘Stargate’:
NP: How did you come to be involved with CCFF?
JR: Madison was born three years ago, April 13th and it would’ve been…was it that September or the following September that I did Stargate for the first time? I think it was the following September, two years ago, I met all of you guys at the Gatecon convention here in Vancouver. We did an auction there and wasn’t it at that convention that a napkin that I wiped, we signed a script, Amanda (Tapping of Stargate SG-1 and LEO Award winner) and all of us, and we put lipstick on and kissed the script and wiped it with the napkin. I think that napkin went for $340. That made me think ‘oh my god, these people are amazing, this is to help a cause.’ And then it was that year I guess that I tried to actually auction stuff off and, not items, but dinners, lunches and a dog-walk with Amanda and her dog. So we set a $10,000 goal that year and we ended up going over.
NP: What are the most important facts to know about Cystic Fibrosis?
JR: I think one of the most important facts is to know the urgency. That we’re up against a time-frame here. This isn’t a disease that people can live with and have it be managed, or have it just be discomfort for their whole life. It is a fatal disease, they only have a limited time to live. So I feel, especially because it’s my niece, that we’re sort of up against a time clock. We want to find a cure before she hits that age. The other thing I think very importantly in talking with my sister Kim, is that Cystic Fibrosis does not affect your outwardly appearance. It doesn’t affect how you look, it doesn’t affect your motor skills, so from the outside you don’t know. It affects internally. It doesn’t affect their brain, or how they think.
NP: How close are we to a cure becoming a reality?
JR: I went to the US Consulate’s house here in Vancouver, he invited me because they were honoring Dr. Lap-Chee Tsui (Nobel Prize nominee), who discovered the Cystic Fibrosis gene. They were saying that ten years ago the life expectancy was 19-20 years of age, when now ten years later, life expectancy is 20-30 years of age, which is a lot more. There are reports that they thought they had found something that they thought would make it a manageable disease, a livable disease, meaning it would be something like Diabetes, but that hasn’t been fully passed yet. I hope, I want to say but I don’t know statistically, that we’re very close. Because that’s personally what I wish to put out there.
NP: What has contributed to the advances and increase in life expectancy?
JR: It’s the research. The Hospital for Sick Children in Toronto is the leading research hospital in the world for Cystic Fibrosis. I would have to contribute the support that we get from people to raise money, and the research that’s being done has some brilliant people working on it to figure it out. And all the gene research and all of the developments that are coming along with that, is helping.
NP: So CF is hereditary?
JR: Yes, it’s an inherited fatal disease. So both my sister and her husband, both parents HAVE to be carriers. Both Kim and Jeff are carriers of the gene. And then two people coming together that are both carriers, you then have a 25% chance of having a child with Cystic Fibrosis. So with her twins, both the twins are carriers but they’re not active. I’m probably a carrier, my older sister is probably a carrier, but her husband probably isn’t.
NP: Is there a test to find out whether or not you are a carrier?
JR: Yes. When I’m ready to have children, both myself and my wife will be tested to see if we’re carriers. Just to know that those would be our chances. The twins were tested at the 3 or 4-month point.
NP: By Amniocentesis?
JR: Yes. Isn’t that amazing?! They can tell from that fluid that they are carriers, but that they don’t have the Cystic Fibrosis active gene.
NP: What are some of the biggest obstacles families of those with CF must overcome?
JR: I think it would be knowing that you’re staring at your child and that you have a better chance of outliving them. Knowing that she may only live till 20 or 30 years of age. Right now Kim is 33 years of age and she most likely already at this point in her life has outlived the life span of her own child. My family in particular, my sister – the way she deals with it, they don’t actually talk a lot about that. They know it’s there, but they are strong believers of what you put out thought-wise, energy-wise to the universe. You help to manifest those things. As aware as she is of the illness and what it entails, she doesn’t concentrate on the fact that ‘my child is only going to live till 30 years of age.’ She’d rather concentrate on ‘what is my child going to achieve in her life span, what can I help her achieve, and that we’ll find a cure.’ She sort of sticks to that mentality. She does Qi Gong, which is a form of Chinese medicine. She’s done Qi Gong on Madison since she was born, from that day in the hospital till today, she still does it every single day, and plus she does therapy in the morning and in the evening, tapping therapy on the lobes and she does laughing therapy. The doctors tell her how healthy Madison is, ‘she’s so healthy, she’s amazing, she looks incredible, blah, blah, blah’. How great she’s doing, that she’s in the top percentile of weight gain, top percentile of height, top percentile of everything, ‘what are you doing’? And Kim told them everything she’s doing, and the doctors said ‘oh you’re doing too much, you don’t need to do that much therapy.’ Hey listen, Madison’s doing that well, Kim’s going to keep doing what’s she’s doing.
NP: How has CCFF helped your family?
JR: There are support groups that they link them with. They’re tremendously helpful to the family, Kimmy says. They offer a lot of support, understanding, explanation and that sort of thing.
NP: How does CCFF allocate funds raised?
JR: A lot of big companies support them. I know that they don’t do individual allocations. The money we raise won’t go to help Madison in particular, it goes to the research. But I think I can request that it go to research for the Delta 5 Gene (F508) which is what she has.
NP: When did you first hear about Sekh’s Party?
JR: At the Gatecon convention. I didn’t go to the first Sekh’s Party that they had, but I heard about it. And then the second time around I guess it was, they contacted me and told me that the money would be going to CF, which was just beautiful. They just called and said that ‘this year we’d like to donate the money raised to CF.’ Because that was the year I had done all the fundraising and everything, and that was my goal to reach $10,000, which of course we surpassed. So they contacted me and said ‘you know this year we’d like to do this, would you mind coming down?’ And I said ‘of course I will…and I’ll continue to come down if you continue to raise money.’
NP: What kinds of items are auctioned at the party to raise funds?
JR: Well last year (2001) I think I missed all that. I showed up for about an hour or so. I think I drew names for a raffle. This year I think they’ve asked me for some stuff to auction, I usually give them whatever I have. But I don’t really have any ‘Stargate’ stuff left, only the odd t-shirt. But for MY fundraiser, I auctioned off lunches, dinners, the dog-walks. This year I am so behind with the fundraising, I don’t know what’s going to happen.
NP: Can you describe your personal experiences with Sekh’s Party the past couple of years?
JR: Insane…next question… (laughs) wonderful, glorious, disturbing, extreme, delightful, incredible, unbelievable, shocking, scary.
NP: JR brushed up on his adjectives this morning.
JR: Yeah. You pick an adjective, it pretty much applies to the Gatecon.
NP: How much collaboration takes place throughout the year between yourself and Sekh in regards to planning the event and fundraising?
JR: The individual fundraiser I do, like that kind of stuff, the dinners and the lunches, Simon in the UK (Wolf Events and JR’s official website) sort of organizes it and sets it up on e-Bay. This year as I’ve said, we’re completely behind. We’ve set no dates, we haven’t auctioned anything off yet because I’m in Toronto for a couple of weeks to maybe even a month, then I come back in September and the convention starts. And then October off to London, I don’t know what I’m going to do this year about raising money. As for Sekh, she’ll e-mail me or my agent and tell me what they need, but she handles everything. She is absolutely incredible! She handles all of that, she does everything, I just show up and try to look pretty, which doesn’t usually happen.
NP: Now come on, that takes no work at all. Would you say your biggest fan-base comes from your role as 'Martouf' on ‘Stargate’?
JR: Yes, most definitely. I don’t think anyone else knows who I am.
NP: How instrumental have ‘Stargate’ fans been in helping your efforts with CF?
JR: It’s all them! I’m shocked that at this point in my career I’m able to raise money for a foundation, for a charity and that I’m able to attach myself to something that means so much to me, and actually be able to auction off a lunch with myself for $2,000 or $1,500 or however much. It’s shocking to me. It’s amazing…it’s humbling. I’m constantly blown away that these fans are so giving, are so loving, it’s amazing. And it’s even more shocking that it’s for myself who isn’t even a regular on the show, I find it unbelievable. But it is ALL the ‘Stargate’ fans, most definitely.
NP: And your character of Martouf isn’t even alive anymore!
JR: No, Martouf isn’t even alive anymore.
NP: How do you feel about your fans becoming so personally involved in a cause that is so close to your heart? Has it brought you closer to them?
JR: Yeah. It’s amazing. I always think it’s important to keep a line, and it’s not just between you and your fans, it’s between me and my agent, between me and my public, that’s fine and I want to keep that line as my career continues. But to have the fans be so giving and so understanding, and they haven’t crossed those lines. Everything they’ve done, they request and they give, is all out of concern and of love, and I believe it, for my sister and for my niece. It’s a great thing.
NP: What are other people’s perceptions of your ‘Stargate’ fans?
JR: I haven’t had any negative perception. I think everybody, my closest friends and family, are just so thankful. It’s nice what everyone offers and puts out there.
NP: You have been a regular at ‘Stargate’ Conventions since day one. Can you tell us a little bit about your experiences at these events.
JR: (Laughs) Just refer to the adjectives I’ve already used. Come on, it’s like crazy. Only on a sci-fi show would I experience this. But they’re great, I love them.
NP: What is the best way for those interested to become involved with CCFF and other CF organizations internationally?
JR: On my site, Simon has posted links to CCFF and to CF. It’s as simple as contacting the CF foundation within your city or country, wherever it is you are. And there were fans last year that were raising money at their office, or doing little events at their schools to raise money. It’s amazing. I encourage you to do that. Donating is important as well. I think also Simon has on my site there a link to the CCFF where you can make donations via their webpage over the net.
NP: Has your celebrity status enabled you to do more for the cause than you would have been able to otherwise?
JR: If it wasn’t for the ‘Stargate’ fans, no one knows who the hell I am. Most definitely, I’ve said this before. I may be in some project or some other movie that does well and I have a little tiny part, but the ‘Stargate’ fans…it’s aired all over the world, and it’s really international and that’s where most of my fans are, international. I don’t know if it’s that you guys care more about it or what. But you guys make that effort. I don’t know anyone who’s watching any of my other shows kind of going ‘I’m going to write him a letter.’
NP: How can other celebrities get involved?
JR: Best way is just to call them. When I started doing it for CF, I just called up and said, ‘you don’t know who I am, but…’ But the funny thing is, when I went to the US Consulate’s house, surprisingly enough, Ken Reed who invited me to the ski thing to do charity, he’s attached to CF as well, he invited me up to the ski challenge. And I said, I didn’t really feel like going because no one knows me but it’s very flattering and all. Turns out Ken’s a fan and his kids are fans of ‘Stargate’. So if you want to be attached, you just call up the foundation within your city. Amanda Tapping has offered to help in any way she can, like if we manage to wrangle up another dog-walk or something.
NP: Any chance we’ll be seeing you on ‘Stargate’ again?
JR: Definitely not.
NP: Even an appearance in the proposed feature film? After all, it IS science-fiction, anything is possible!
JR: I don’t think so. You know that they wrote me back in last summer, but I was shooting a movie in Montreal. I don’t know what their idea was, or how they got me back on, but no talk as of yet about the movie, so I don’t think so. I think Martouf is gone for good.
NP: What other projects are you working on now?
JR: The movie I shot about Leonard Cohen (starring role) is hopefully going to do the Festival circuit first.
NP: Is that the film you shot in New York City, right before 9/11?
JR: Yes, we did that one in Montreal and New York. I was there in New York right before, I left a week prior from New York.
NP: What’s the film’s title?
JR: “The Favorite Game.” It’s an Independent, and it won’t be out to theaters or anything for probably another year or so, but it will do the Festival circuit first, hopefully Berlin, internationally. And “Stuck,” the movie that Amanda and I did together in March, I don’t know where that’s at. Indie as well, about four people that get stuck in an elevator. Other than that, I’ve really just been trying to write, you know what I mean?! I’m trying to still write the same script I’ve been trying to write for how many years. I kept handing it out to people, but now I’m trying to tackle it myself. It’s something that’s very close to me. It’s very meaningful. And I’m just now starting to read some more scripts and hopefully maybe be starting to shoot something soon. I agreed to do a play here in Vancouver and I’m so excited about it. It’s an original by Sara Deakins, who’s an actress, and she’s going to be in it as well. Tom Scholte is directing it, wonderful actor. He’s a great actor, he’s won a number of awards, been in a ton of movies. Also co-starring are Marya Delver, Gabrielle Miller, Sarah Deakins, Robert Maloney and Michael Dupud.
NP: Is the play comedy or drama?
JR: It’s a bit of both, I suppose. It’s called “Of Buses and Diners.” Great group of people.
NP: Is there anything else you’d like people to know about CF?
JR: Go and read, definitely. That’s one of the huge things. I mean my family didn’t know what Cystic Fibrosis was, we’d heard of Cystic Fibrosis, but we were unclear of exactly what it was. So please educate yourselves as to what it is, how it works and that there’s an urgency to find a cure…and we will.
NP: Thank-you JR.
JR: Thank you and god bless everyone.
According to Max Pinsky, President of BC CCFF, the Foundation sponsors several fundraisers throughout the year, with the ’65 Roses Gala’ being held in November 2002. Proceeds from fundraising efforts are allocated to fund grant-proposed research and specialized CF clinics across the country. BC has two Cystic Fibrosis clinics - Pediatric Cystic Fibrosis clinic at BC Children’s Hospital and the Adult Cystic Fibrosis clinic at St. Paul’s. With the average lifespan of CF patients at 35.6 years, a higher proportion of those with the disease are now living into adulthood and proving that they are indeed winning their fight for survival. The Foundation always welcomes those who would like to lend a hand or make a donation.
Canadian Cystic Fibrosis Foundation
US Cystic Fibrosis Foundation
*Copyright 2002 Lisa R. Wartur & NoodleHead Productions - All Rights Reserved
Author's note: I had the opportunity and privilege to interview Canadian actor, JR Bourne (Martouf of Stargate SG-1) at a Starbucks in Vancouver, British Columbia in 2002. I would like to express my appreciation to JR, JR's sister Kim, Murray Gibson, BC CCFF President Max Pinsky, Sekh and Stargate fans. This exclusive interview is on tape, copyrighted and is NOT to be reproduced anywhere online or off without permission. - Lisa