A LIFETIME COMMITMENT 5

A Passionate Cystic Fibrosis Supporter, Corona del Mar Resident Sue Hook Has Supported the Cause Since High School

Sue Hook was just 15 and a sophomore at Paramount High School in Los Angeles in 1965 when she and her friend, Nancy Myers, found out about a little boy in their neighborhood who had cystic fibrosis.

“We formed a club and called ourselves The Conquerettes,” Sue says. “We were going to conquer cystic fibrosis.”

The life expectancy at that time for children with cystic fibrosis was less than five years (today, it is 41). Hook relates that the 15-member club raised money through paper drives and selling doughnuts throughout their neighborhood.

“I remember visiting other high schools to organize more clubs, with El Modena High School in Orange on the list,” she says.

Moving to Anaheim in 1969, Hook worked as program director for the Cystic Fibrosis Foundation, Orange County, for three years. Leaving employment with the foundation in 1972, but continuing to volunteer, she worked in sales at the company where her father was employed.

Dave Hook met Sue, as he was the landlord for the foundation offices that were located in Anaheim. Because he was a member of the International 20-30 Club, a service organization for men between those ages, he and the club members became involved with CF events, among them a radio auction.

The Hooks were married in 1978, and, in 1982, the Cystic Fibrosis Foundation’s Orange County Guild was formed, with its inaugural gala launched the following year.

“Dave and I attended as guests the first year,” Sue says, “with me joining the gala committee the next year, and in 1985, the third year, Dave and I were presented the gala’s Breath of Life Award for our support.”

In 1987, Sue became gala chairman, a role she continued for 20 years. She is quick to say that she had a variety of co-chairs during those years–Heidi Miller, Cindy Parker, Eva Mann, Karen Hall, and Dean Gerrie, among others.

It was in the early 1980s that Dave became a national trustee on the Cystic Fibrosis National Foundation Board, later suggesting to Sue in 1985 that she take his place. She has continued to serve as a trustee on the national board for 30 years, and, after becoming Guild President in 1988, she has since served 26 of the last 27 years in that capacity.

Sue was thrilled in 2009, when she gave the gala chairmanship reins to Gayle and Dan Demsher, who she says have done a fantastic job. The Demsher’s son, Connor, now 15, has cystic fibrosis.

“Their energy and commitment is amazing,” she says of the dedicated couple.

According to Sue, it was decided that this year’s gala, the 32nd, would be the final gala for the Orange County Guild. She says there were a number of reasons for the decision–Gayle is extremely busy as the national sales director for Katherine Cosmetics and the same could be said for many of the other committee members.

“Besides that,” Sue says, “there are two other Orange County cystic fibrosis fundraisers at the same time–our Klassic Golf Event six weeks before the gala and Pipeline to a Cure six weeks after the gala. By retiring our event, our members will be able to devote their time and energy to many other CF fundraisers.”

The final gala, held May 31st at the Newport Beach Marriott Resort & Spa, was attended by 385 guests and netted nearly $400,000 for CF.

“We are certainly leaving on a high note,” Sue says. “We honored Judy and Bob Burlingham with the Breath of Life Award, which was great because Judy has chaired Pipeline to a Cure for years. And, we got a chance to recognize and thank those who helped us raise more than $11 million the past 32 years. It felt like a big group hug from the podium.”

The evening included 28-year-old Stacy Motenko speaking about life with cystic fibrosis. It was her 14th year to speak at the gala, ever since Sue suggested she chronicle her life with CF after she saw the impact several young people had sharing their cystic fibrosis journey with people attending CF’s American Airlines-sponsored Celebrity Ski Weekend in Vail, Colorado.

“Stacy is a tenacious, reflective speaker and is a beautiful girl inside and out,” Sue says. “Her accomplishments are amazing, one of which is being part of a 13-member panel advising the FDA and also serving on the Cystic Fibrosis Adult Advisory Committee.”

Stacy, who was diagnosed with CF at three months of age, says of Sue: “She is the prime example of someone who has dedicated their life to helping others. It is not possible to express my gratitude to her for all that she has done to allow me and all the others with CF to live better, longer lives. And, when that day comes when there is a cure or control for all people with cystic fibrosis, I hope Sue knows the large role that she played in making that happen.”

Sue gets emotional when she talks about Stacy and the gala committee, many of whom have been with her for decades. But, even more telling is what the committee has to say about her. Here is just a sampling:

Gail Isen, Guild executive vice president and secretary, 28-year gala reservations chairman and Stacy Motenko’s aunt: “Sue keeps in touch with, and informed about, so many of the CF patients. However, her caring nature is not limited to those with CF. She is the favorite ‘aunt’ of the children and grandchildren of everyone in the Guild, always asking about them and knows all their names. She means the world to all of us.”

Karen Hall, 20+-year arrangements chairman: “Sue has been an inspiration to me since our first meeting. ‘Sweet Sue,’ as Dave calls her, is at the top of the list for so many families and CF patients. She has given them hope in the past, in the present, and in the future.”

Danni Good, nine-year raffle chairman, who lost two nephews to CF: “Sue is without a doubt the most dynamic, inspiring and devoted woman I know. She just keeps giving and going strong for this cause.”

Gayle and Dan Demsher, seven-year gala chairs: “Sue is the most amazing, compassionate, driven person we have ever met, and we are so fortunate she is a leader in the fight to end CF.”

Former committee design chairman and Breath of Life recipient Dean Gerrie (he designed and implemented the invitations and commemorative journal for 30 years): “Sue’s commitment to CF is breathtaking!”

Walter Urie, another Breath of Life awardee, who has photographed the CF children annually for 27 years to showcase their photos at the gala: “Sue has been at every single photo shoot with the CF children. She greets each family, asking how their child is doing and always has Sees Candies for the kids. If anybody deserves recognition, she does.”

Shawn Parr, host of Nash Nights Live, NashFM 94.7, in Nashville, Breath of Life honoree and 21-year gala master of ceremonies and auctioneer: “I’ve never met anyone who pushes so hard and gives so much–so freely–who doesn’t have to. There is no one in her family with cystic fibrosis. She is amazing!”

Paul Motenko, nine-year president of the Southern California Chapter of the Cystic Fibrosis Foundation and 28-year supporter with wife Debbie through daughter Stacy (the Motenko and Isen families were presented the Breath of Life Award in 2002): “The lives of so many of our children are better because of Sue. She is a true hero!”

Amazed she has no connection to cystic fibrosis and yet has devoted her life to the cause, Sue says when asked about it, “But, I do have a major connection to CF through the children with CF and their families. Not all of them have survived, and those memorial services are difficult, at best, but, we are so close to the final answers, and I will be thrilled when that day comes.”

Sue is more than satisfied with her life’s journey.

“This is what I was meant to do,” she says. “The path was there, and I followed it. And, I must say, without Dave’s support and encouragement, I couldn’t have accomplished what I have.”

“It is the end of an era, but not the end of the Guild. But, it is bittersweet. I must admit that I will miss my special day with Walter Urie, as he shoots the photos of those with CF. I always considered that day my perk.”

CFF.org