Hyundai donates $100,000 for Marshfield Clinic pediatric projects Grant supports cancer research

MARSHFIELD -- Three years ago, Heather Adler received news no parent ever wants -- or expects -- to hear: Her daughter had cancer.
Abigail Adler was 4 years old when her parents took her to the doctor to check on what they thought was a lazy eye. It turned out the left eye had a tumor and needed to be removed.
"We thought, 'Why our child?'" Heather Adler said.
Fortunately for the Marshfield family, the cancer didn't spread, and it went into remission after eight months of treatment. Abigail now has a prosthetic eye, but she has handled it all with optimism and "high spirits," her mother said.
"We need to be aware of, no matter what age, children can get cancer," Heather Adler said. "We need to raise more awareness."
To that end, Hyundai Hope on Wheels, a joint effort of Hyundai Motor America and its more than 800 dealers nationwide, announced a $100,000 grant Friday to the Marshfield Clinic for childhood cancer research.
The grant is part of $7.1 million Hyundai is donating this month to 71 pediatric cancer research projects and groups nationwide. September is National Childhood Cancer Awareness Month.
By the end of 2011, Hyundai Hope on Wheels will have committed $43 million in donations to pediatric cancer research since its inception in 1998.
Part of the grant to the Clinic came from regional Hyundai dealers' sales.
"Every time a car is sold, a portion goes to Hope on Wheels," said Don Scaffidi, owner of Scaffidi Hyundai in Stevens Point. "It's wonderful -- this money will hopefully go toward finding a cure (for cancer)."
The funds also will be used to foster communication and teach coping skills to patients and families, said Dr. Michael McManus, a pediatric physician at the Clinic. Doctors will work with patients both in-person and through videoconferencing.
"It's a privilege for our oncology team here at the Marshfield Clinic to care for these children and watch them grow up," McManus said during a press conference about the grant.
Abigail and several other cancer survivors attended the press conference, and afterward dipped their hands in paint and placed their imprints together on a poster.
"These children and their loved ones have gone through so much and are true heroes," said Dr. Karl Ulrich, Clinic president and CEO.

Abigail Adler, 6, with help from Sarah Long, a post-doctoral fellow in pediatric psychology, puts her handprint on a poster Friday after the Hyundai Hope on Wheels grant check presentation at the Marshfield Clinic. / (Laura Schmitt/For the Wausau Daily Herald)

CareSouth Announces Exclusive Partnership with Low Vision Works

CareSouth Homecare Professionals announces partnership with Low Vision Works, providing a uniquely effective treatment for patients who suffer from low vision disabilities. The separate division is doing business as Low Vision Works by CareSouth and is now serving the Greensboro, Lexington and Asheboro areas of North Carolina.
Greensboro, GA, August 03, 2011 --(PR.com)-- CareSouth Homecare Professionals, a leading provider of home health care, has formed a partnership with Low Vision Works (LVW) to provide a uniquely effective treatment for patients who suffer from low vision disabilities. This separate division of CareSouth will be doing business as Low Vision Works by CareSouth. The company is an exclusive provider of the visual therapy service in the Greensboro, Lexington and Asheboro areas. The announcement was made today by CareSouth chief executive officer and president, Rick Griffin.

Low vision is not curable by surgery, medication or corrective lenses and can become progressively worse with age. For many seniors, walking safely, cooking and watching television are extremely challenging.

“We chose to partner with Low Vision Works because this program provides a viable solution for visual problems that were once deemed hopeless,” said Griffin. “Many of our patients suffer from low vision that becomes worse with age. Until now, there were few options for relief. We are thrilled to be a part of this revolutionary, new procedure providing help for people with low vision disabilities.”

Many senior adults suffer from low vision disabilities including such eye diseases as Age Related Macular Degeneration (AMD), Diabetic Retinopathy and Glaucoma. The specialized low vision treatment offered by Low Vision Works by CareSouth will use visual retraining - finding the healthy areas of the eye and then training the eye to use those healthy areas for clearer vision. It is designed specifically to help those who suffer from Macular degeneration. And it is 100% covered by Medicare for those eligible.

The treatment has increased visual acuity an average of 40 to 60 percent for patients who received visual retraining in combination with home modification. Reading speed and accuracy improved equally dramatically, resulting in overall functional independence. More information on Low Vision Works can be found online at www.LowVisionWorks.com.

CareSouth Homecare Professionals provides home health care services in seven states in the United States, offering various programs and specialized services including fall prevention, total hip and knee orthopedic rehabilitation, wound care management, pulmonary disease and cardiovascular disease management. For more information about CareSouth, visit www.caresouth.com.

For more information about Low Vision Works by CareSouth please call Mike Thomas of Low Vision Works by CareSouth at 866-989-0020.

CareSouth Homecare Professionals
Diana Porter
800-241-3363
Contact
caresouth.com

FAIRHOPE, ALABAMA Upcoming library program addresses vision issues

FAIRHOPE, Ala. — A new educational program for visually impaired computer users will soon begin in Baldwin County. Through the joint efforts of Cheryl Bradley of the Fairhope Public Library, volunteer Anne Hinrichs, AiSquared, Project A.C.T. (Accessible Computer Training) and Dr. Joe Fontenot of Community Services for Vision Rehabilitation (CSVR), the program will help visually impaired computer users.

A new program to improve the computer skills of adults suffering from vision loss will be introduced by Dr. Joe Fontenot (above) on Oct. 12 at the Fairhope Public Library. Staff photo by Curt Chapman.

The program, scheduled to begin next month, will begin with a talk by Fontenot about low vision and the aids and devices available, including computer accessibility features and special computer software. The session will take place on Oct. 12, from 1:15 to 2 p.m., in the Giddens Auditorium at Fairhope Public Library.

Following this introductory talk, there will be a computer workshop on accessibility programs by Hinrichs, who is a volunteer computer instructor for the library. This will be held from 2:30 to 3:30. If you would like to attend the latter session, advance registration is required because space is limited. Email reference@fairhopelibrary.org, or call 251-929-1464.

Fontenot said 15 computer stations at the library are equipped with software designed to help those with vision problems. The new program is a way of introducing new users to the capabilities of the software, both at the library and at home.

“It’s the first (program) of its kind,” he said. “It’s one of the first in the state tied to a public library. This is really going to be nice. With this software, they can continue to use the computer.”

Macular degeneration, cataracts, glaucoma and diabetes can all rob someone of their vision, Fontenot said. He pointed out, “There’s an epidemic of diabetes related to the epidemic of obesity. You can go blind from it.”

According to Fontenot, vision loss in the United States is expected to double by 2040. Right now, he said, “it’s more common than ever.”

The ongoing program will be coordinated with the existing computer education programs at the Fairhope Public Library.

AiSquared, the maker of Zoom Text and other adaptive software, has been supportive of the program, according to a library press release. Software and keyboards were obtained through Project A.C.T., a grant program funded by the Alabama Council for Developmental Disabilities.

Sign Up Now! Second Technology Olympics Set for October!

SIGN UP NOW! Second Technology Olympics for South Carolina Students Who are Blind or Visually Impaired!

 

COLUMBIA, S.C.  The possibilities are endless for South Carolina students who are blind or visually impaired at the second Technology Olympics on Thursday, October 27 at EdVenture Children's Museum! Sponsored by the University of South Carolina Braille Grant, the South Carolina Commission for the Blind, and the South Carolina School for the Deaf and the Blind (SCSDB), students grades K-12 are eligible to participate in a series of high-tech adventures in access technology from 9 a.m. to 3 p.m. The event is free and open to pre-registered participants only.
Activities using access technology will include events with adaptive devices, such as electronic note-takers, monoculars, digital talking book players, and talking GPS systems. Students will be awarded prizes and ribbons for their participation.
This year, the event will introduce families of blind and visually impaired children, ages birth to 3, to their own adventures in technology. This new addition will provide information for accessibility and the latest in access technology for younger individuals to ensure further enrichment and endless possibilities. To be eligible, families must be currently served by SCSDB's Early Intervention Program.
�Access technology is essential for independence for students who are blind or visually impaired,� said Clay Jeffcoat, SCSDB access technology coordinator. �This event will raise students' motivation level to use the technology and provide opportunities to make new friends, improve self-esteem, and further their level of independence.�
Lunches and T-shirts for student participants will be provided. Lunch for pre-registered guests and professionals will be available for $7. T-shirts for pre-registered guests and professionals will be available for $10.
For more information, contact Lori Kopf at the University of South Carolina Upstate School of Education at (864) 503-5573, or via e-mail at lkopf@uscupstate.edu. Inquiries may also be directed to Tina Herzberg at the University of South Carolina Upstate at (864) 503-5572, or via e-mail at therzberg@uscupstate.edu. For more information on South Carolina Braille, please visit http://braillesc.org/.

STEVIE WONDER ABOUT STEVE JOBS

Photo: Ann Johansson/Getty Images

At a Stevie Wonder tribute in Los Angeles' Echo Park last Saturday, the 22-time Grammy winner took the stage briefly to sing a few bars and talk to the audience about Sept. 11, the power of love and Apple's (AAPL) Steve Jobs:

"And I want you all to give a hand to someone that you know whose health is very bad at this time... His company took the challenge in making his technology accessible to everyone. In the spirit of caring and moving the world forward: Steve Jobs. Because there's nothing on the iPhone or the iPad that you can do that I can't do. As a matter of fact, I can be talking to you, you can be looking at me, and I can be doing whatever I need to do and you don't even know what I'm doing. Yeah!"

SLEEP STUDY POSTED MY MAXIAIDS

We know many in the blind community have heard of Vanda's work on a sleep problem related to total blindness, including our fliers in some recent Maxi Aids packages. We thank you for your continued support of our efforts to evaluate a potential treatment for Non-24-Hour Sleep Wake Disorder (N24HSWD) for totally blind individuals. Over the past year, we have made steady progress in recruiting participants in our clinical study, but we still have work to do.

The deadline to enroll patients is forthcoming and we need your help to reach our recruitment goal as soon as possible. We remind you that without enough patients in our study, we cannot develop a treatment for this severe sleep disorder that afflicts so many people. Please help us spread the word about this very important research. Your efforts are sincerely appreciated. More information on N24HSWD is available at www.24sleepwake.com. You may also be interested in listening to a recent Seminars@Hadley talk on this topic by Dr. Steven Lockley of Harvard Medical School titled "Sleep, Light and Your Body Clock".

As a reminder, we have set up a registry and a survey that are available by phone and on the web. Below is the announcement of our study with phone, email and web contact information and eligibility criteria.

Thank you for your help in reaching our goal. Sincerely, William Hoos, MS, MBA Clinical Affairs, Vanda Pharmaceuticals

Announcement:

Do you ever feel like your sleep patterns are different than the rest of the world? Do you
sometimes feel the unwanted urge or need to fall asleep during the day time when you
need to be awake? Do you also find that you feel just to wide awake to fall or stay asleep
during the night time?

If you are blind, this could be due to a real sleep problem related to the lack of light
needed to keep your body’s internal clock in sync with the day and night cycle. If you
or someone you know might be affected, please call 1-888-389-7034 or email
info@non24registry.com to learn about an ongoing clinical research study that is evaluating a new investigational treatment of this type of sleep problem.

When calling or visiting online at www.non24registry.com, you can also complete a short sleep survey. For each completed survey, $25 will be donated to an organization that supports individuals with blindness. You may be eligible to participate in the clinical trial if you are between 18 and 75 years of age and are totally blind. Volunteers will be compensated for their participation in the clinical study and will receive study related medication, medical evaluations, and transportation at no cost.

Thank You,
The MaxiAids Team

Institute to Form Low Vision Design Committee

The National Institute of Building Sciences plans to form a multidisciplinary open committee later this year to explore how design of the built environment can affect the needs of the tens of millions of people with low vision in the United States. The Low Vision Design Committee is a direct outcome of the Workshop on Improving Building Design for Persons with Low Vision sponsored by the U. S. General Services Administration and the Institute last year. View proceedings of this workshop and related material. The user name and password are both lowvision (one word, all lower case). To express an interest in joining the Low Vision Design Committee, send an email with your contact information to the Institute.

UNIVRSITY OF GEORGIA ATHENS HOLDS CONFERENCE

UGA hosting conferences on low vision treatment Posted: Jul 15, 2011 4:13 AM EDT Updated: Jul 15, 2011 4:13 AM EDT


ATHENS, Ga. (AP) - The University of Georgia is set to host a conference on low vision treatment.

The inaugural Aniridia and Low Vision Research Symposium is set to run Friday through Sunday at the University of Georgia Center for Continuing Education and Conference Center. It coincides with the Aniridia Foundation International 2011 "Make a Miracle" Medical Conference, which began Wednesday and runs through Sunday, also at the Georgia Center.

Aniridia is a rare, congenital eye disorder characterized by a complete or partial absence of the iris, or colored part of the eye.

The two events together will be the largest international gathering focused on treating aniridia on the broad range of developmental and ocular disorders associated with the disease.

RESEARCH STUDIES CHANGES

Including disabled critical to health studies, researchers say

by Priscilla Kunamalla
May 11, 2011

The first formal guidelines for a new model called “universal design of research,” to address the under-representation of people with disabilities in mainstream health research was proposed Wednesday by researchers at Case Western Reserve University in Cleveland.


“We want to change the way health-care research is done so that people with disabilities are routinely included in studies,” Ann Williams, a researcher and adjunct faculty member at Case Western Reserve University’s Frances Payne Bolton School of Nursing.


Universal design of research, which was described in a commentary published in this week’s Science Translational Medicine, provides researchers with practical guidelines to promote inclusion of people with disabilities in biomedical and psychosocial research as participants.


Williams and colleagues called on researchers to rethink requirements for research participants so that more people, including those with disabilities, can benefit from future health-care interventions.


According to the Centers for Disease Control and Prevention 47.5 million Americans, or 22 percent of the U.S. population, have a disability.


They also have from the same health conditions that affect the general population, such as diabetes and heart disease, but are often excluded as potential research participants because of their disabilities.


If researchers are unable to provide materials to people with low vision or blindness to fill out questionnaires, they may exclude those potential participants from their study without exploring ways to include them, Williams said.


According to Janet Szlyk, president and executive director of The Chicago Lighthouse, a non-profit that serves the city’s blind and visually impaired population, universal design of research is extremely critical.


“It’s so much more compelling when you read a research study and see a wide variety of people who were included as participants,” said Szlyk, who oversees the center’s Low Vision Clinic, where broad-based research and clinical trials are underway. “Those results could be generalizable to anyone.”


She said there is no lack of enthusiasm among the blind and visually impaired community to take part in research studies.


“Our community is excited about participating in research,” Szlyk said. “They want to be involved and make a difference. Even if it doesn’t help them directly, they want to help others. It’s very positive.”


Williams pointed out that while extensive research has been done relating to specific disabilities themselves, information about general health concerns for people with disabilities is sparse.


“If you’re not sampling from the entire population, you really can’t apply your results to the entire population.” Williams said. “A person in a wheelchair needs to prevent heart disease just as much as a person who can walk.”


By including that person in standard research on exercise as a prevention for heart disease, researchers could begin to build a database on what is needed for that particular aspect of human diversity she said.


According to Williams, researchers have consistently found that when products and environments are designed to be accessible to people with disabilities, those things become easier to use and more convenient for the general population.


For example, curb cuts, which are concrete ramps connecting the surface of a sidewalk with the street, enable people in wheelchairs to move safely in public places.


Curb cuts were a result of the Americans with Disabilities Act in 1990 that made public places accessible to those with disabilities, but the population who are the largest users of curb cuts are healthy people who have no mobility impairment, Williams said.


The general public now regularly uses curb cuts for bicycles, wagons, strollers and rolling luggage.


“If we design research that has enough flexibility to include people with disabilities and is more generalizable, the entire population will benefit,” Williams said. “It has happened in every other area where universal design has been applied.”


At Case Western Reserve University, Williams and her team hope that researchers will begin to include people with disabilities in their studies.


They purchased as easy-to-use amplifiers for the hearing impaired, iPads, for the visually impaired to easily enlarge print, and other equipment.


Those tools will be available for loan to researchers to help them incorporate the new design approach into their studies.


Williams recalls that only a few years ago that health-care research excluded women and minorities from research done on healthy, caucasian men. When they were included as participants, differences in the findings resulted.


“We want it to be just as unacceptable to exclude people with disabilities, as it currently is to exclude women and minorities from research,” Williams said. “We think that differences will emerge because disabilities are a part of human diversity.”

http://news.medill.northwestern.edu/chicago/news.aspx?id=186084