January 30, 2012
Blindness In The News
January 30, 2012
1. Neighbors: Woman pens story of special brother
Rapid City Journal
January 22, 2012
2. Stem cell blindness treatment study reaction roundup
USA TODAY
January 24, 2012
3. Stem cell treatment reveres blindness
The Australian News
January 25, 2012
4. Blindness doesn’t hold Layton mother back
Standard-Examiner
January 26, 2012
5. Inspiring words from NHL ambassador
Inquirer
January 28, 2012
1. Neighbors: woman pens story of special brother
Author and big sister Konnie Ellis knew early on that her younger brother, Rory Hoffman, was special.
“At 6 months, he was already humming songs like ‘Jesus Loves Me.’ He has perfect pitch so you can hum a note and he knows what it is,” said Ellis, who lives in Rapid City.
By age 4, he was playing the drums in the Lemmon family’s country gospel band, and at 5 had played on his first record album. He learned to play the guitar by holding it upside down, backward and in his lap, because it was easier. He could play 13 instruments -- including the saxophone, harmonica, piano, accordion and banjo -- by his 13th birthday.
More incredibly, Hoffman -- who has won two Independent Country Music Association Musician of the Year awards and is now a successful multi-instrumentalist living in Nashville -- was born blind.
But the Hoffman siblings never let that get in their way. All four children of Karol and Roland Hoffman – Konnie, her twin sister Kim and youngest brother Reed, along with Rory – were born blind.
“Nobody really has any idea of why. It’s kind of a mystery,” Ellis said. “Blindness is really nothing more than an inconvenience, so we just adapt and adjust.”
Ellis has done just that in writing her first book, “Rory’s Story, The Early Years,” which covers her brother’s childhood and growing-up years and offers readers a look at a happy family finding fulfillment despite obstacles.
“I’ve always wanted to write books and stories,” she said. “When I was 16, I started writing about my own life, then got busy with college, marriage, kids and all that. Then Rory’s career really started taking off. He has a more exciting life.”
Years later, technology made writing about her family much easier. Ellis wrote the book using keyboard commands on her laptop, which has a screen reader. Even editing was simplified; her screen reader had settings that identified her editor’s marks.
“There are just so many reasons that it hasn’t happened until now,” said Ellis, who plans to expand the book into a series.
“Rory’s Story” ends right after Hoffman graduates from high school, so there are still plenty of topics to cover, including college, his independent music production company, his move to Nashville and his career in recording, studio work, producing, engineering and performing. (Rapid City audiences were wowed by Hoffman, who performed everything from gospel to country to jazz at a 2010 Black Hills Area Habitat for Humanity concert and at last year’s Guitar Masters.)
“I am a proud sister,” said Ellis, who hopes readers find inspiration in her family’s story: “Just that a disability doesn’t have to be a huge obstacle. You can do anything you want with your life, especially if you have God. There’s really nothing you can’t do; he can pretty much help us through anything.”
“Rory’s Story,” published by Tate Publishing, is available at amazon.com and will be released to local bookstores on Tuesday, Jan. 24.
A voice for WAVI
Shapeera Afraid of Lightning took the mission of Working Against Violence, Inc. to heart during her reign as Mrs. South Dakota. She doesn’t expect that to end now that she has handed over her crown.
“I knew that I wanted to work with that organization, but not end it when my title ended,” she said.
Afraid of Lightning started a new program with WAVI called “I Will Survive” that encourages participants to express themselves through song, poetry or painting.
“It’s a positive showcase for people who have been through domestic violence or sexual assault or those who have been affected by it,” she said. “It will help them say, ‘I still have a personality, I’m still enjoying life’ and will give them the courage to share what they’ve been through.”
Afraid of Lightning and her four sisters perform as D'Vine Favor, a gospel singing group, and she teaches five hip-hop classes at week Barefoot Dance Studio. She and her husband, Quincy, work together in The Miracle Center ministry, and she is a substitute teacher.
But pageants are still close to her heart.
“I love it,” said Afraid of Lightning, who crowned a new Mrs. South Dakota in Sioux Falls this weekend. (The pageant did not include any West River contestants.) “I don’t know that women know how much advantage they can take. It’s such a great network, a great experience. It’s a voice that people wouldn’t have had before.”
As the director of three pageants -- Junior Miss South Dakota High, Miss South Dakota High and Miss South Dakota Collegiate – Afraid of Lightning said she hopes to provide those networking experiences to other young women and girls.
http://rapidcityjournal.com/news/neighbors-woman-pens-story-of-special-brother/article_e3ddfef8-44ba-11e1-b980-0019bb2963f4.html
2. Stem cell blindness treatment study reaction roundup
The first early safety trial results from a human embryonic stem cell treatment for blindness has garnered headlines.
Reported by The Lancet, the privately-funded study led by UCLA and Advanced Cell Technology researchers reported tentative signs of improved vision in two women suffering a progressive form of blindness.
For perspective, we asked stem cell pioneer James Thomson of Cellular Dynamics International to comment. Thomson headed the University of Wisconsin team that in 1998 first isolated human embryonic stem cells (ES) , the master cells from which all other tissues in the body differentiate during development. Since 2006, Thomson has also been a leader in human induced pluripotent stem cell (iPS) research, looking at how these adult cells can be transformed into ones resembling ES cells:
"I've always thought that the transplantation of ES or iPS cell derivatives would be extremely challenging, and that the press has over-hyped the possibility of success in the short term. However, the transplantation of retinal pigmented epithelium for the treatment of certain forms of blindness is, I believe, a possible exception. I'm more familiar with the work being done by the CIRM funded California Project to Cure Blindness than the work performed by ACT, but it is an area that shows real promise. Although the initial work has been done with human ES cells, it is an area where human iPS cells will be useful if the transplanted cells are attacked by the immune system."
ACT's Robert Lanza, senior author on The Lancet study, says the team hopes to shift to iPS studies in future clinical trials for just that reason, however medical researchers need to establish the safety of "plutipotent" human embryonic stem cell treatments in medical tests, before moving on to iPS cells.
One point of confusion seen in reader comments over the story is whether ACT destroyed embryos in the study to generate the treatment cells. In 2006, ACT developed a "single-cell biopsy" method to remove a lone cell from an embryo, leaving it otherwise intact and viable, and then use that single cell to generate stem cells in laboratory research colonies.
We asked Lanza whether these sort of cells were used in The Lancet study. Here is his reply, by email:
"Yes, we used the single-cell biopsy method (but we discarded the embryo afterwards). However, we have several hESC (human embryonic stem cell) lines where the embryos were not destroyed -- we plan to switch to those hESC lines in future (phase 3/4) clinical trials."
So there you have it.
"This really is a landmark study," said stem cell biologist Paul Tesar of Case Western Reserve University in Cleveland, who was not part of the research. Although the firm, Geron Corp. of Menlo Park, Calif., pulled out of human embryonic stem cell research last fall, the ACT results look promising for the field he says. "The eye turns out to be a really good place to check for safety with this therapy," he says.
Geron backed away from its stem cell clinical trials for paralysis, despite claiming unpublished good results, citing poor economic conditions.
3. Stem cell treatment reveres blindness
SCIENTISTS have partly reversed blindness in two patients after giving them a treatment based on human embryonic stem cells -- a breakthrough experts hope could lead to the development of the first effective treatment for the world's leading cause of vision loss.
A report published yesterday in The Lancet is the world's first peer-reviewed account of the use of human embryonic stem cells in people for the treatment of any condition.
Two women considered legally blind before the experiments - one in her 50s, the other in her 70s - experienced measured improvements in sight described as "impressive" by an independent expert, with no safety problems or other side-effects for at least four months after the treatments.
The older woman suffered from age-related macular degeneration, the developed world's leading cause of blindness, while the younger had a different version of the disease.
Both conditions are currently considered untreatable.
The US researchers reported that both women were able to count more letters on a visual acuity chart in the weeks after their treatment, in which one of each woman's eyeballs was injected with 50,000 retinal cells grown in a laboratory from the embryonic stem cells.
The authors cautioned that they could not tell whether the reported improvements in the women's sight were due to the treatment, to the immune-suppressing drugs they were given to prevent their bodies rejecting the cells, or to a placebo effect. While the purpose of the experiment was to see whether the injections might be safe - larger trials designed to prove safety and efficacy have yet to come - the US researchers say the findings suggest that transplanting cells derived from human embryonic stem cells into people might work.
Australian experts have hailed the results as promising, and say the results boost hopes that the long-awaited promise of stem-cell treatments might yet be realised.
Martin Pera, chairman of stem cell science at the University of Melbourne, said several other research teams were also preparing similar experiments, and it would "soon be clear whether these preliminary results . . . are a harbinger of a new era in cell therapy for this devastating disease".
"We can't be sure, but it's a promising start," Professor Pera said.
"Macular degeneration is an interesting condition to look at because we don't need to create many cells (to inject), and the eye is an advantageous site because we can image it well and follow the fate of the graft."
First isolated 14 years ago, human embryonic stem cells have long caused scientific excitement but also ethical concerns over the need to extract cells from human embryos.
Practical concerns have also held back treatments, including the fear that injected cells might grow uncontrollably and cause tumors, or even change into the wrong types of cells, leading to issues such as hair growing where it is not wanted.
4. Blindness doesn’t hold Layton mother back
LAYTON — Barbie Elliott, 42, has never seen the keys on a piano, words on a page, or the smile on a child’s face.
Despite these visual limitations, Elliott plays the piano expertly — by ear.
She has a bachelor’s degree in music composition, is a leader in the blind community, and a stay-at-home mom of four children, all with their sight.
“Everything I’ve wanted to do, I’ve found a way to accomplish it,” said Elliott, who was born blind.
She believes that blind people can do just about anything, given the right training and tools.
For example, Elliott’s 12-year-old daughter sings in her seventh-grade choir and wanted her mother to serve as an accompanist.
“I wondered how that was going to work,” said Lisa Miner, choir teacher at Fairfield Junior High in Kaysville. “But, if she says she can do it, she can.”
Miner played the song once for Elliott, who could then immediately play back everything she heard — including, to Miner’s chagrin, the mistakes.
“She played that thing after one hearing. It’s just amazing,” said Miner.
Elliott said her love for music began at an early age. When her siblings watched cartoons she would concentrate on the music from them.
“I paid attention to what (the cartoons) did with music to cause emotion,” she said.
She would then imitate the sounds she heard on the piano.
Her love for music was apparent at such an early age that her grandfather passed on his piano to her when she was 3 years old. She still uses that piano in her home today.
She began composing her own music because others would correct her mistakes, thinking she was making them simply because she was blind.
“I started writing my own songs because nobody could fix that. I still do it that way to this day,” she said.
A few years ago she cut her own CD, complete with her own compositions and arrangements.
Elliott is a firm believer that blind people can be independent, employable, and productive members of society.
She was the second completely blind person to graduate from a mainstream school in Utah. At the time, most blind children attended a boarding school in Ogden, she said.
While her parents thought the school offered a good education, they did not approve of the boarding school format.
They wanted their daughter to learn how to function in a family, and she couldn’t do that if she didn’t live with one.
As a child, Elliott said, her mother taught her many basic life skills, such as, how to cook on a gas stove, change diapers and clean the house.
“My mother believed I could do it, and then made me do it,” Elliott said. “My mom was very patient. She recognized that my failure wasn’t always her fault or that I should quit.”
As the Weber/Davis Chapter President of the National Federation of the Blind of Utah, Elliott offers services to blind youth ages 13 to 26 to help them learn these same life skills. She works with them on a monthly basis through a program called Project STRIVE (Successful Transition Requires Independence, Vocation, and Education.)
The unique program, offered just in Utah, provides blind youth with blind adult mentors who teach life, education, and employment readiness skills.
This month, the group is taking the youth to tour the University of Utah and then taking them ice skating.
“We can teach sighted people that (the blind) can do a lot more than some people think,” Elliott said. “We want to change the perception that has been there for a long time that blind people should not have to work as hard.”
http://www.standard.net/stories/2012/01/25/blindness-doesn-t-hold-layton-mother-back
5. Inspiring words from NHL ambassador
The color barrier couldn't stop Willie O'Ree from playing in the NHL.
Neither could his secret: He was blind in one eye.
"Forget about what you can't see and concentrate on what you can see," O'Ree told a group of around 50 young hockey players at the Flyers SkateZone in Pennsauken on Wednesday.
The group plays the sport through the Ed Snider Youth Hockey Foundation, an organization created in 2005 by the
Flyers owner to promote the game among inner-city and underprivileged youngsters.
The 76-year-old O'Ree, the NHL's director of youth development and ambassador for the league's Hockey is for
Everyone initiative, told the young players to follow their dreams.
He followed his dream, all the way from his home in Fredericton, New Brunswick, to a spot on the roster of the NHL's
Boston Bruins. He became the league's first black player on Jan. 18, 1958.
"There wasn't a game that went by where there wasn't a racial comment by the other team or by the fans," said O'Ree, who played parts of two seasons in the NHL but 21 seasons of professional hockey. "I learned that names wouldn't hurt me."
The color barrier wasn't the only obstacle O'Ree overcame. He also made the NHL - and collected 1,022 points while playing for 11 teams in his long career - despite an injury in youth hockey that left him blind in his right eye.
"The surgeon told me, 'You'll never play hockey again,' " O'Ree said. "But he didn't know how I felt inside. I had a dream to play professional hockey.
"I didn't tell anybody about my eye. I was a right wing, and I would turn my head all the way to see the puck.
"My philosophy is, 'If you think you can, you can. If you think you can't, you're right.' "
O'Ree's message resonated with 16-year-old C.J. Diaz, a Pennsauken resident who has been playing hockey for threeyears through the Snider foundation.
"I can connect to him," Diaz said. "He overcame so much because he had a dream and he had a once-in-a-lifetime moment. He is an inspiration."
O'Ree's mission dovetails with the Snider foundation's goal of seeking to provide opportunities in hockey to youths who might think the sport is beyond their reach. According to the NHL, O'Ree has helped launch more than 30 grassroots programs since 1998, serving more than 45,000 children.
O'Ree was in the area this week in support of events in conjunction with the American Hockey League's All-Star Classic in Atlantic City. Before Wednesday's hockey clinic, O'Ree spoke to about 200 youngsters at the H.H. Davis Elementary School in Camden.
O'Ree knows ice hockey is an expensive sport that sometimes is beyond the means of underprivileged children. But he said he had seen first-hand how organizations such as the Snider foundation and others across North America have made a difference in lives.
And the kids love the game, he said.
"Once they get out on the ice, they don't want to come off," O'Ree said.
"Not once in the 14 years I've been doing this have I ever heard a kid say, 'Mr. O'Ree, I don't like this. I'm not coming back.' "
http://articles.philly.com/2012-01-28/sports/30673920_1_mr-o-ree-hockey-clinic-willie-o-ree
