The newsletter for families and supporters of the Foundation for Retinal Research
February 2008 www.TFRR.org • info@tffr.org • 1-224-927-5063 Sally Lewinski, editor
Family to Family
By Chrissy Cornell
This just in: The 6th Annual LCA Triathlon Fundraiser will take place in conjunction with the Big Foot Triathlon in Lake Geneva, WI on SUNDAY, JUNE 22ND,2008!
Once again, our family will participate in the Big Foot Triathlon in Lake Geneva, Wisconsin while raising funds for the Foundation for Retinal Research (FRR).
The FRR is dedicated to enhancing lives of people with degenerative retinal disease by funding medical research projects, sponsoring bi-annual LCA Conference, and heightening public awareness of visual impairments.
For more information about the Foundation, please visit www.tfrr.org
FRR joins ‘GoodSearch’
Foundation for Retinal Research (FRR) recently registered with GoodSearch and GoodShop, a new Yahoo!-powered search engine and online shopping mall. Supporters will be able to raise money for the FRR by using GoodSearch to search the Internet and GoodShop to make online purchases. GoodSearch/Goodshop will make a donation to FRR every time you search the internet and every time you purchase something at one of their partner merchants (including Target, Gap, EBay, Macy’s, Best Buy, Barnes & Noble and hundreds more)!
For more information, or to begin use, go to www.goodsearch.com.
LCA Family Conference is July 24-26, 2008
We are partnering with Project 3000 for this year’s Conference, July 24-26 at the Cleveland Clinic’s Cole Eye Institute.
As you may know, Chicago Cubs’ Derrek Lee’s daughter Jada was diagnosed with Leber's Congenital Amaurosis. He and his wife Christina started Project 3000 through their 1st Touch Foundation to find the estimated 3000 people in PROJECT 3000. Project 3000’s mission is to help researchers find a cure and eradicate this disease.
We hope more families than ever before will come together for the LCA Conference in 2008. This Conference is a unique opportunity to learn first hand the most current information on LCA directly from the researchers and doctors who are working on it. This is a wonderful chance to bring your list of questions, and your families' lists of questions and get straight answers. We will be offering medical exams, ERGs and retinal photographs through the Cole Eye Institute on Thursday, July 24 and July 25. You must fill out the medical request sheet and return it promptly as space is limited. Visit http://www.trff.org/ often to get updates on the conference.
Friday, July 25 Medical Exams by appointment Cole Eye Institute 8 a.m. – 4 p.m. Conference Check-in InterContinental Hotel 5 p.m. – 9 p.m.
Welcome Reception InterContinental Hotel 7 p.m. – 9 p.m.
Saturday, July 26 Breakfast/Registration InterContinental Hotel 7:30 a.m. – 8:30 a.m. Childcare check-in Cleveland Sight Center 7:45 a.m. – 8:15 a.m.
Presentations InterContinental Hotel 8:30 a.m. – 4:45 p.m.
Family Dinner InterContinental Hotel 6 p.m. – 8 p.m. Sunday, July 27 Breakfast/Registration InterContinental Hotel 7:30 a.m. – 8:30 a.m.
Childcare check-in Cleveland Sight Center 7:45 a.m. – 8:15 a.m.
Presentations InterContinental Hotel 8:30 a.m. 12:00 p.m.
LCA Science Update: Trials & Gene Therapy Clinical Trial Update
by: Dr. Jerry Chader
As many of you already know, the first clinical trial for a form of Leber’s Congenital Amaurosis (LCA) has begun. The trial is being conducted at University College London by a consortium of investigators under the leadership of Professor Robin Ali and involves the technique of Gene Replacement Therapy.
The trial is to replace the RPE65 gene which is mutated and non-functional in a small percentage of LCA patients, with a normal functional copy of the gene. In this way, the normal gene “blueprint” should make normal copies of the RPE65 protein. The RPE65 protein is made in Retinal Pigment Epithelial (RPE) cells and is needed in thevisual process. The replacement gene is carried into the RPE cells through the use of a “vector”. Vectors are modified viruses that transport the replacement gene to the target cell (RPE cells in this case) and facilitate theentrance of the gene into the cell. In this case, Dr. Ali and his coworkers have chosen the harmless AAV vector in their work.
Phase 1 of the clinical trial is called the “safety phase” since it tests the safety of boththe gene and the vector in the eyes of human subjects. The subjects chosen are a small number of young adults who had developedthe symptoms of LCA as children. So far, the subjects are doing well as to safety issues although it is too early to determine if any improvement in vision can be measured. If Phase 1 of the trial continues to go well, theresearchers can proceed to Phases 2 and 3 where the efficacy of the treatment is the prime consideration. At least two other similar clinical trials are being planned in theUSA at the University of Pennsylvania.
These human trials are based on long and painstaking studies on animal models of LCA with RPE65 mutations similar to those in humans. In particular, studies in a dog model of LCA have been extremely successful. About 7 years ago, a small number of affected dogs were treated with RPE65 gene replacement therapy and they are still seeing well in the treated areas of the retina. This has demonstrated the long termeffects of the therapy.
Professor Tony Moore at Moorfield’s Hospital in London stresses that it might be some time before the long term results of the gene replacement therapy are known.
In June of last year, a report appeared in the prestigious scientific journal NATURE describing a new gene whose mutations leadto a form of LCA. This is the LCA5 gene thatis now the thirteenth gene reported to be involved in LCA. Taken together, these gene mutations probably account for about 60% ofall cases of LCA. A consortium of investigators led by Prof. Frans Cremers at the University of Nigmegen in the Netherlands was responsible for identification of this latest gene involvementin LCA.
The LCA5 gene normally is expressed in retinal photoreceptor cells and codes for a protein called “lebercilin”. Although the exact function of lebercilin is not known, it has been localized to a specialized region of the photoreceptor cell called the cilium. This is a region of intense protein transport with in the cell and so it is likely that mutations inthe lebercilin protein interfere with normal protein transport and trafficking in photoreceptors. In support of this theory, Dr. Marius Ueffing in Germany, using a sensitivenew technique called Proteomics, has found that lebercilin specifically interacts with other proteins that are well known to be involved in protein transport within the photoreceptor cell and are, as such, part of a“molecular transport belt.” Interestingly, mutations in genes for two other proteins that localize to the cilium area of photoreceptors (RPGRIP1 andCEP290) also cause forms of LCA. This demonstrates the importance ofthe cilium area and its proteins in maintaining normal vision, and that mutations in other cilial proteins might cause forms of LCA. The Cremers research consortium is continuing to intensively study the LCA5 gene, the normal function(s) of its protein product lebercilin, and how LCA5 gene mutations can lead to visual problems in LCA. Hopefully, such knowledge will lead to a viable treatment for LCA5 form of Leber’s Disease, possibly similar to the Gene Therapy described above for RPE65mutation.
Foleys host 4th Annual Golf Outing for FRR
The Foley Golf Tournament was started 4 years ago by Ed and Karen Foley of Standish, Maine. They are friends and former neighbors of Chris and Heather Drury and family, including 4 year old Paige (LCA). We, Tyler Shaffer (LCA 9 yrs.)and family met the Drurys at the Los Angeles LCA Conference 4 years ago and we have all participated in this great fundraiser since. If not for the Conference we probably would never have met these great families living only 20 minutes from us. The Foleys are a wonderful giving family with two small children of their own, dedicating many hours to this fundraiser which is held each summer at Spring Meadows Golf Course in Gray, Maine. The tournament benefits the Foundation for Retinal Research along with the Make a Wish Foundation. It's a great day of Golf, Lobster Bake, BBQ and Fun!
Nothing but net
Chicago Bulls take time out to read with Lighthouse for the Blind students
On Tuesday, November 13, 2007, as part of the NBA’s Read to Achieve program, approximately 15 children were invited to the Chicago Bulls training facility in Deerfield, Illinois, by the Chicago Lighthouse for the Blind. Two of the participants were nine-year-old Charlie Gentzkow, and five-year-old Sela Cornell both of whom have LCA. Bulls players Joakim Noah, Joe Smith, Adrian Griffin, Thomas Gardner and JamesOn Curry were there to read aloud to the children and to watch Charlie demonstrate how he reads braille. When Charlie finished reading one player commented, “I’ve never seen anyone read braille before and I’m blown away!” The Read to Achieve initiative was launched in the fall of 2001 as an effort by all 29 NBA teams to inspire literacy by encouraging families and adults to read regularly with young children. Following the reading, the players were available to sign autographs, answer questions, and spend time on the court with the children showing them how to dribble and shoot the basketball. As part of the program the Bulls organization donated beanbag chairs and braille books to both The Chicago Lighthouse and to the Hadley School for the Blind. It was a wonderful way to raise awareness and a great time for all!
More than $240,000 raised from grassroots events
Amodeo Yearly Membership Drive Dunellen, NJ $ 5,446.00
Beverly Esienhut Jewlery & Purse Party Chicago, IL $ 449.50
Binny’s Beverage Depot Chicago, IL $ 5,206.00
Bushland Walk-a-thon Milwaukee, WI $26,715.00
5th Annual LCA Triathlon Lake Geneva, WI $52,470.00
Dominic Iannarino Marathon Fund Raiser Chicago, IL $ 1,325.76
Foley- 4th Annual Golf Outing Gray, ME $ 4,000.00
Follo Mercedes Raffle Palm Harbor, FL $ 4,500.00
Frommer Purse Party Highland Park, IL $ 3,600.00
Grand Raffle Fundraiser Chicago, IL $11,645.70
Isabelle's Eyes Turnersville, NJ $11,205.00
Johansen 3rd Annual Walk-a-Thon Tualatin, OR $16,842.50
Kocheran Social Party South River, NJ $ 6,152.50
LaGrange Highland Women's Club LaGrange Highlands, IL $7,000
Moncman Misc. Events Center Valley, PA $ 3,000.00
Moncman Golf Outing Center Valley, PA $ 7,550.00
Nutt "Old Cell Phone" Donations Turnersville, NJ $ 1,329.60
Pennington Dog Walk Cincinnati, OH $ 200.00
Purpura Walk-a-Thon Naperville, IL $13,143.00
St. Arnaud Various Local Events Chicago, IL $32,000
Special Kids Network Chicago, IL $15,000.00
Williams Walk with a Vision Warner Robins, GA $12,406.00
The FRR would like to thank everyone who has hosted a fundraiser for the Foundation in 2007. Also, thank you to everyone's hard work and continued determination to fund our mission. Your commitment to helping is sincerely appreciated. The FRR has enjoyed great success in the past year all because of the amazing families who have stepped up the challenge of hosting fundraisers. This year we have raised in grassroots fundraising over $240,000. This year will be even bigger and better. We have several ways of becoming more involved with fundraising for the FRR through walk-a-thons, triathlons, ets. Decide this is the year you want to make a difference!
Cubs’ Sweet Lou Piniella helps raise money for FRR
On a cold and blustery Saturday in December, Binny’s Beverage Depot celebrated the Grand Opening of a new location: 1132 S. Jefferson Street, Chicago. A $20.00 cover charge, which included wine and beer tastings, was donated to the Foundation for Retinal Research. Dozens of people showed up to meet CubsManager Lou Piniella, who generously took time to meet the LCA families and autograph photos, baseballs and even wine bottles. Patrick St. Arnaud (2), Mirielle St. Arnaud (1), and Sela Cornell (5), who have LCA, were there with their families to support the event. Bystanders and supporters were interested in learning more about the FRR and LCA, and enjoyed meeting the children. Thank you to Binny’s Beverage Depot and The Chicago Cubs for a wonderful fundraising event and an opportunity to heighten public awareness!!
Hockey players are good sports with blind children
Article Published Saturday, October 13, 2007
By CHUCK GORMLEY Courier-Post Staff
When Blackwood's Sue Nutt received a permission slip from the Overbrook School for the Blind asking if her 3-year-old daughter, Isabelle, could skate with the Philadelphia Flyers, she had obvious reservations.
"I thought, "How is that going to work?" Nutt said Friday, moments before letting her daughter "skate" around the ice with Flyers goaltender Martin Biron at the Virtua Center Flyers Skate Zone. "This is the first time she's ever been on skates, but it's veryexciting. Overwhelming, actually."
Born with Leber's congenital amaurosis, a rare hereditary disorder that leads to retinal dysfunction in infants, Isabelle Nutt has been blind since birth.
On Friday she wore a pair of figure skates, but instead of skating, Isabelle sat on a metal folding chair and was pushed around the ice by Biron, a 6-foot-3 goal tender who will be in net tonight when the Flyers play their home opener against the New York Islanders at the Wachovia Center.
Biron, who spent eight seasons with the Buffalo Sabres before getting traded to the Flyers in February, said he has worked with mentally and physically disabled children before, but had never skated with visually impaired children.
"It was a unique experience," he said. "It didn't take long for Isabelle to get the idea of what it feels like to skate. She felt the snow on the ice and moved her feet back and forth like she was skating. As much as I tried to help her understand, she made her own image in her head and that was impressive."
Biron, who has a 2year-old daughter, a 1year- old son and another child on the way, said within 20 minutes he and Isabelle had formed a relationship.
"It went from a little girl not wanting to go with me to the two of us sitting on chairs singing Wheels On the Bus. I've got kids at home, too.
"To be able to work with kids and getenjoyment out of them is very rewarding."
Flyers coach John Stevens said he was equally impressed with the visually impaired skaters he saw Friday.
Stevens, 41, had his playing career ended when he was struck in the left eye by a hockey puck. He still has limited vision in that eye.
"When you talk about one of your senses being taken away, it's remarkable what the (Overbrook) school does and what the people are able to do in life," Stevens said.
"They're having a lot tougher time than me. There are times I have trouble hanging a picture on the wall. But I'm not compromised the way these people areand they deserve alot more credit than I do."
Biron said skating with Isabelle on Friday helped put in perspective the importance of being a hockey player and the significance of tonight's home opener.
"When you skate with kids like this you get the feeling there is so much more to life than just the game," Biron said. "Being part of the community and the people here is an important piece of the puzzle. We have such a stage to tell a story and to help people and this is just another example."
Helping the sighted see
Article published Jan 12, 2008
By VICTOR CALDERON
The Salinas Californian
One by one, about two dozen teenagers ventured carefully out of their classroom Friday morning in a line.
Trusting to the person directly in front of them, they moved hesitantly out of their building at the Mission Trails Regional Occupational Program in Salinas, across a parking lot and into a portable classroom.
Some giggled, clutching the person in front of them or calling out that they were lost. Others warned their classmates of upcoming walls, steps or desks to avoid.
Finally, they returned to their original classroom and took off the blindfolds they'd worn for 20 minutes.
But one of their leaders, Krystle Maya Zamudio, needed no blindfold for the exercise.
Zamudio, 21, was born blind. The Everett Alvarez High School and Hartnell College graduate regularly travels to schools such as Mission Trails to raise awareness of what it's like to be disabled.
"The message I give to students is that people with disabilities aren't that different from other people. We're just missing something," she said before the class.
The lesson was particularly important for Friday's students, who are studying to be physical therapy aides in a class taught by Berna Maya, Zamudio's aunt. Zamudio has visited the class for six years, talking with students about how she deals with being blind.
A couple of students said they felt scared and frustrated walking in complete darkness, but all agreed the blindfold walk was a good lesson learned. "My generation doesn't seem to appreciate what they do have as much," said Tyler Jensen, 17. "This was a good situation for us to experience."
Zamudio was born with week, Leber congenital amaurosis, an inherited retinal degenerative disease characterized by severe loss of vision at birth. Early on, she learned to read the Braille alphabet, a system of raised dots which can be read by touch.
At Hartnell, Zamudio performed so well in her studies, she was inducted into the Phi Theta Kappa Honor Society. Next week, she leaves for California State University, Fresno, where she will study psychology. Zamudio said she is close with her family, which included five brothers ranging in age from 8 to 27.
It's going to be hard when I move, but I'm excited about Fresno State," she said.
Man with LCA appointed Superior Court clerk in Arizona
If justice is blind, then Juan Pablo Guzman may fit right in as clerk of the Superior Court of Arizona for Santa Cruz County. Guzman, 28, who has been visually impaired since birth with LCA, was appointed by Gov. Janet Napolitano following an interview the previous day in Phoenix along with two other finalists - Sylvia Montanez, the associate clerk, and Karla Zuniga.
"It was with great pleasure that I appointed Mr. Juan Pablo Guzman to fill the vacancy," Napolitano said in a prepared statement. "I am sure that as clerk he will bring his strong work ethic and will be a great resource for the people of Santa Cruz County. Juan Pablo has shown great dedication in all his endeavors and he will continue to make the State of Arizona proud through his continued public service. I wish him and his colleagues the best ofluck." Guzman received a bachelor's degree in political science, with a minor in Spanish, and graduated Cum Laude from the University of Arizona in 2000.
In January 2001, he began working for the City of Nogales as public information specialist, providing information about city affairs to local, state, national and international media outlets. As well, he organized media events for public ceremonies and projects.
Friend, colleague and former boss, Deputy City Manager John E. Kissinger and County Attorney George Silva both said Guzman maybe underestimated because of his youth and inexperience.
"But once people actually start working with him, they will realize what a tremendous asset we have on our hands," Silva said. Guzman was born with Leber's Congenital Amaurosis, a genetic disorder that left him blind. He relies on a personal computer equipped with one of the latest versions of the software "Jaws." The system has a screen reader. "It reads everything on the screen back to me through the speakers," Guzman explained, adding that it alsoincludes a Braille display by the keyboard. Guzman says he's just like any other person and that being blind hasn't stopped him from achieving success.
It's "just a normal situation, like everyone else. I just do things alittle different," he said, adding that he has problems to resolve "just like anyone else."
He credits his success to the unity of his family and his mother's "tenacity," along with the support of co-workers and friends.
He is a self-proclaimed "family-oriented person."
His father has been his "friend and adviser." He is someone who "gives advice at the perfect time," Guzman said.
Guzman and his sister, who is also blind, have been successful because their mother "envisioned her kids as normal kids."
"My family has taught me there is a solution for everything. If there is an obstacle or a detour in the street, there's a way around it. It may cost you more effort and time, but you can get around the barricade," he said.
A Sense of Place
Even LCA, Stephanie Fernandes keeps in step with the Boston College marching band Article Published December 26, 2007
By Reeves Wiedeman Boston Globe Correspondent
Stephanie Fernandes starts 40 seconds of marching band hell by squeezing between a tuba and trumpet. Marching backward, she becomes the center axis in a pinwheel of saxophones and tubas, spinning 360 degreesinto a field-length company front as she slides between another trumpet and mellophone.
Forward . . . left . . . backward . . .between yet another pair of tubas.
And, finally, a breather.
Sixteen direction changes in 40 seconds, 10 more than the average, tests the patience and coordination of every piccolo player in the Boston College marching band during its Western-themed halftime show. But Fernandes isn't fazed. Forming the bottom-left corner of the on-field "B" in "Boston College," even the roar of 44,500 fans packed into Alumni Stadium can't shake her. The freshman from Steubenville, Ohio, was nervous stepping onto the field for her first college marching band performance, sure, but entering Alumni wasn't any different than the four years she spent marching in Steubenville High School's Harding Stadium.
Fernandes simply readies to hit the first note of "For Boston," sending the Eagles onto the field and the stadium into a frenzy the same note the marching band will hit a final time this year at Friday's Champs Sports Bowl in Orlando, Fla. (a performance Fernandes will miss because of her commitments as a soprano in BC'sUniversity Chorale).
Her focus is on where she needs to sprint next, on what note she needs to hit in perfect pitch. She had known marching band was for her well before she arrived at BC. Standing on this field had been her goal well before she sent the e-mail to the marching band's director this summer, the e-mail that read:
"For the past four years, band has been a major part of my life, and I believe I would like to continue performing.
However, I am totally blind."
When Fernandes was born, she looked right into her parents' eyes.
It seemed that this time, Dave and Terri, had gotten lucky. They had been shocked four years earlier when they found out their newborn son, Steph's brother Nate, was blind. Nate's eyes were fine, but his retina was malformed - a working camera without any film. Dave and Terri decided to go through genetic counseling, where they discovered an unknown and unwelcome compatibility: a recessive gene that, when combined, gave each of their children a 25 percent chance of contracting Leber's congenital amaurosis.
They now knew there was the same 25 percent chance their second child, a girl, would be blind just like her older brother. But two months went by, and Steph's vision stayed clear - Nate had a sister, and the Fernandeses' odds had evened out.
Then, excruciatingly quickly, Steph's vision began to fade.
In six years as section instructor for the BC marching band's woodwinds, Brian Fulks had never heard anyone hit the double B flat. He expected, as the band entered its first rehearsal of a Tchaikovsky suite, that he would have to strike the notefrom the score as he did each year.
Fulks recalls stopping the band after hearing a pitch-perfect double B-flat pierce the practice room and saying: "Wow, who was that?"
"Oh, that was me," Fernandes said. "Sorry."
"No," Fulks said. "That was perfect."
Some studies have found that blind musicians are more likely than their sighted bandmates to have perfect pitch, that rarest of gifts that is the envy of musicians everywhere. A 2004 study in Nature magazine found that people born blind or who went blind early in childhood are better able to recognize variations in pitch than are sighted people. This doesn't necessarily make someone a superior musician. But it doesn't hurt.
"I really think she has this sixth sense about music," says the marching band's piccolo section leader, Katy Morrissey. "Without even seeing the conductor, she can tell when we start to speed up or even when the conductor is going to end the song. She never makes mistakes."
But despite her musical virtuosity, simply knowing what to play presents challenges for Fernandes. Sheet music does her little good, as she depends on Braille transcripts, recordings, and mostly trial and error. This all seems to have helped her musical ear: She even corrected Fulks on what note she should be playing once, with the director admitting his mistake after checking the sheet music that Fernandes would never see.
Evaluate a significant experience, achievement, risk you have taken, or ethical dilemma you have faced and its impact on you.
That's the first essay question listed onthe Common Application, the gateway into Boston College. The responses are typically filled with tales of disabilities conquered, challenges surmounted, and trauma overcome.
But Fernandes did not mention her blindness - perhaps the ultimate disability, challenge, or trauma - in her application to BC last year. She didn't have to. She had a 4.0 grade point average in high school and a good score on the standardized ACT college admission test, despite algebra text books that took up four volumes in Braille. Each assignment took multiple attempts - once or twice in Braille for herself, then again to turn in to her teachers - consistently keeping her up till 1 a.m. She turned down a full ride to Providence College. She did marching band, chorus, and drama not for her resume but because she loved each one. She was named the best attorney on the Steubenville High School mock trial team her sophomore and junior years. Like any good lawyer who values stage presence, she scoped out the courtroom before each trial find the jury box and witness stand. She made one opponent cry.
It's this side that Nate gets to see more than most-Steph's competitive streak. She is a perfectionist. She makes calculated decisions, typically not those that involve moving halfway across the country to a school where she is the only blind undergrad. She is organized, perhaps a result of the classical music she's played all her life, or so Terri says a study once told her. Dave used to call his daughter a little dictator.
It is near impossible to get Fernandes to complain. About living in a forced triple. About not having her Braille textbooks for three weeks because the company lost order. And certainly not being blind.
"I have it pretty easy, because they tried everything out on Nate and then said, 'Oh, that didn't work, guess we'll try something else on Steph,' " she says.
Nate certainly paved the way for Steph marching band. Nate was a drummer, and drummers can talk to one another on the field. A short "Step up" or "Just a bit to right" from his bandmates was enough to send Nate in the right direction.
"In middle school, people said, 'He'll do it a couple years, and then we won't have to deal with it anymore,' says Nate, who no longer marches but still plays keyboards at church in Dayton, Ohio. "But when i stuck around, people realized they'd have to deal with me."
So when Steph wanted to join, blindness was nothing new for the Steubenville band. But things were different. It's not quite so easy talking to someone next to you with your lips on a piccolo's mouthpiece.
Outwardly,her mother said OK. Inwardly, she groaned.
"I thought, There's so much on our plate, oh shoot, now what are we gonna do," Terri says. "This os one of those times where people told us "There's no way. You gotta be kidding.'"
But Steph wasn't kidding. Her neighbor and best friend, Caitlin Beach, had always wanted to be in the marching band, but she didn't play an instrument. Steph was her ticket in: Beach would guide Fernandes around the field by the shoulders while Fernandes played her piccolo and did her best to stay in formation. Fernandes marched at each home football game as the Big Red won every gamie it played during her four years, including two state championships.
When Fernandes arrived at BC- the only piccolo who had already memorized the band's first set of music - she wanted no special treatment. Band director Dave Healey had already concocted a plan similar tothe one Fernandes used in high school. A fellow freshman learning the marches along with Fernandes would guide her around the field by the shoulder. But the duo quickly failed. The freshman told Fulks she couldn't learn the steps herself and be responsible for keeping Fernandes in one piece.
"It broke my heart to think that (Fernandes) might have to be on the sidelines as one of the best players in the band," Morrissey says.
Fernandes got frustrated and distressed- not because she couldn't march but because she blamed herself for making things hard on another band member. Many of the senior piccolo players understandably did not want to give up their final year of marching. It seemed unlikely that Fernandes would get on the field.
Then Krystle North showed up. A two-year marching band veteran, North volunteered to give leading Fernandes a try - "It's better that Steph play than I play," she remembers telling Morrissey.
North questioned whether they could pull off the band's lightning-quick halftime show, when there's no time to whisper changes of direction into Fernandes's right ear. The arrangement wasn't perfect. North once sent Fernandes marching straight into a trash can. But the pair began to click, moving alomst like one body.
If anything, it is now North who looks nervous squirring Fernandes through flying tubas and cruising snare drums as she barks movements into Fernandes's ear. North says she has steered Fernandes in the wrong direction on several occasions only to have her charge drag her the right way.
"If Steph had to march without Krystle, she could probably do it,: Healey says. "I hope she can sense the energy in the stadium, because it's plapable to the rest of us. i just hope she can feel that."
Dear Friends:
By David Brint, Co-Founder of FRR
I want to recognize and thank the FRR Associate Board. Under the leadership of Mike Cornell, the Board has organized and been holding regular meetings. They are overseeing the event fundraising activities, preparing for the Conference and suggesting ways that teh FRR can be more effective. Betsy and I cannot tell you how much this leadership means to us and the organization. If we are going to continue to expand and support all of our efforts we need help from the Associate Board and from all of you who are holding events, passing along information and getting involved. I also want to make you aware that we are in the process (albeat long) of establishing the FRR-Canada. Many of our friends and supporters are Canadian and in order to accept deductible donations an organization needs to be tax exempt under Canadian law. The FRR-Canada should be operational by the end of the summer and we trust that many of our Canadian friends will be a part of its leadership. Only six months until the conference, please register early and let us know if you have ideas or concerns.
FRR Board of Directors
Betsy & David Brint
Ronnie & Alan Schwartz
Aaron Brint
Steven Brint, M.D.
Claire & Richard Cortesi
Sue & Paul Fishbein
Arlene & Mark Frommer
Sally & Tim Higginson
Laurie Hochberg, M.D.
Carolyn & Roger Horchow
Audrey & Fred Horne
Joyce & Dr. Sam Krain
Pam & Andy McGaan
Andrew Schwartz
Claudia & Steven Schwartz
Susie & David Sherman
Heidi & Gary Tyson
FRR Scientific Advisiory Board
Gerald J. Chader, Ph.D.
Irene Maumenee, M.D.
Steven U. Brint, M.D.
Constance Cepko, Ph.D.
Eugene de Juan, M.D.
Mark Humauyn, M.D.
Weng Tao, M.D., Ph. D.
Josseline Kaplan, M.D.
Stephan Daiger, Ph. D.
Jean Bennett, M.D.
Edwin Stone, M.D. Ph. D.
FRR Associate Board
Dave Bushland
Chrissy & Mike Cornell
Karen Irvine
Rachel Miller
Chris Rockey
Lee St. Arnaud
