Update on GINA - Genetic Information Nondiscrimination Act

I'm passing along the following press release for those interested - but there's more to GINA going on and I'll update that shortly.


PRESS RELEASE11/20/09

Historic Genetic Information Nondiscrimination Act Takes Effect
EEOC Assumes New Area of Jurisdiction to Protect Confidentiality of Genetic Information

WASHINGTON -- In the first legislative expansion of its jurisdiction since passage of the Americans with Disabilities Act (ADA) in 1990, the U.S. Equal Employment Opportunity Commission (EEOC) on Saturday will assume responsibility for enforcing Title II of the Genetic Information Nondiscrimination Act (GINA).
GINA, signed into law in May 2008, prohibits discrimination by health insurers and employers based on individuals’ genetic information. Genetic information includes the results of genetic tests to determine whether someone is at increased risk of acquiring a condition (such as some forms of breast cancer) in the future, as well as an individual’s family medical history.“

GINA affirms the principle central to all employment discrimination laws – that all people have the right to be judged according to their ability to do a job, not on stereotypical assumptions,” said Acting EEOC Chair Stuart J. Ishimaru. “No one should be denied a job or the right to be treated fairly in the workplace based on fears that he or she may develop some condition in the future.”

Specifically, the law prohibits the use of genetic information in making employment decisions, restricts the acquisition of genetic information by employers and others, imposes strict confidentiality requirements, and prohibits retaliation against individuals who oppose actions made unlawful by GINA or who participate in proceedings to vindicate rights under the law or aid others in doing so. The same remedies, including compensatory and punitive damages, are available under Title II of GINA as are available under Title VII of the Civil Rights Act and the ADA.
Acting Vice Chair Christine Griffin said, “Title II of GINA is an ideal complement to the ADA Amendments Act. With both laws now effective, American workers are protected if they experience discrimination because of their disability or because of impairments they may develop.”

The EEOC is charged with issuing regulations implementing Title II of GINA. On March 2, 2009, it published a Notice of Proposed Rulemaking to implement Title II with proposed regulations and received over 40 public comments in response. The final regulations implementing Title II are currently under review by the Office of Management and Budget and will be issued as soon as the review process is concluded.

The EEOC is responsible for enforcing federal laws prohibiting employment discrimination. Further information about the EEOC is available on its web site at www.eeoc.gov.

Health update

I'm glad I'm going to see Dr. Seward next week. I'm in one of those fatigue phases. I've spent most of the last two days asleep, even though I've gotten up and tried to be active. I've had the runs - actually five times in the last hour so I don't think I'm going to bed anytime soon. I'm alwasy afraid to go to sleep when I'm having this problem because I'm afraid the faucet, sort of speak, will keep flowing and I'll have a rather regretable explosion. Trust me - it isn't pretty.

I've also been coughing more than usual. I know it isn't just me as several friends have mentioned it. When I try to exercise I really start coughing, so I have a feeling my asthma meds need to be adjusted.

I need to blog about my insurance saga - I just haven't had the energy to be honest.

More later.

Celebration of braille - for New York city area readers

Dear Friends and Colleagues,

CCVIP invites you to a celebration of Braille and its inventor, Louis Braille!

On Thursday, December 3, at 6:00 p.m., CCVIP will host a presentation by Michael Mellor, author of "A Touch of "Genius," his definitive biography of Louis Braille, as a kick off to the traveling exhibit on Braille, his life and work that will be on view at Baruch's William and Anita Newman Library from November 23 through December 23. We will hear author Mellor read from his book and talk about the process of researching it. Reception, book signing (and sale) and a tour of the exhibit will follow the presentation.

Please RSVP at (646) 312-1420.

Attached is an invitation that you can print and share with friends or simply e-mail. Please feel free to share this message with others who might be interested.

Thanks, and we look forward to greeting you on December 3rd at,
151 East 25th street, between Lexington and 3rd Avenues, in room 750.

Sincerely,

Karen Gourgey Ed. D.
Director, Computer Center for Visually Impaired People

Wrap for the Cure

I'm posting this message from Karen T. If anyone's in the Greensboro area and can help, I know she'd really appreciate it. You don't have to be an HPS'er to help - just willing to pitch in.

Hey gang,

If you live close to Greensboro, NC and would like to help the HPS Network earn some cash please let me know by Wednesday 10AM.

This is the challenge: Belk's Dept store at Four Seasons Town Center in Greensboro, NC is allowing nonprofits to earn extra Christmas money for wrapping people's gifts. We will be getting donations from Belk customers, and hopefully Belk will kick in a little extra. Not sure about Belk's kicking in, but I do know they are really nice to nonprofits.

You will be wrapping for, of course The HPS Network. If you can work any day or time between now and Dec. 24th PLEASE contact me like yesterday. However by 10am Wednesday will be fine. 336 954 3604.

I have already scheduled myself for Fri. Nov 27 noon to 4pm, Sun. Nov. 29 noon-7pm, Sun. Dec 6 noon-7pm, Fri. Dec 11, 7pm to close. My sister Denise and her husband have volunteered for Fri. Dec 18, 2pm to 4pm, My sister Joyce and I will work again on Sat. Dec 12 9am-1pm.

Not only is this a chance to make some cash, but it also gives us an inroad with Belk's which is a large chain on the east coast.

Thanks so much in advance,
Karen Tillman

An opportunity for legally blind kids to visit Washington

As always, this falls under the heading, just passing along......

2010 NFB LAW Program

The National Federation of the Blind Announces the NFB Leadership and Advocacy in WashingtonProgram for Students

Engaging the Voice of America’s Blind Youth

Applications are due by February 1, 2010: APPLY ONLINE!

Program Details:
Who: Youth who are in Grades 6-9 or Ages 12-16 during the time of the programWhen: April 16-20, 2010Where: Washington, D.C., and Baltimore, MarylandCost: There will be a $250 fee per student/chaperone pair. All other expenses including transportation, room, and board will be provided for each student and their chaperone. All accepted students must be accompanied by a parent/guardian, teacher, or blind/low vision mentor from their home state, a total of twenty-five participants from across the country will be accepted.

About the Program:
The NFB Leadership and Advocacy in Washington, D.C., (LAW) Program will be a four-day experience that will provide blind and low vision students with a unique opportunity to explore the inner workings of our country’s government, its history, and its culture while staying at the national headquarters for the National Federation of the Blind in Baltimore, Maryland. In addition to learning about grassroots legislation efforts, how resolutions are passed, and how various blindness legislation is brought about, participants will learn more about the inner workings of the National Federation of the Blind, its advocacy work for blind individuals, and available resources for blind students and adults. This program also strives to help empower youth with valuable resources to enhance their transition to high school including technology, training programs, publications, mentoring programs, Aids and appliances, and scholarships.

Highlights of the Program include:
Visits to historical sites in Washington, D.C. (Please note: because of the nature of these activities, selected applicants should expect lengthy periods of walking and standing.)
Meetings with, and presentations from, influential government leaders
Presentations by influential leaders from the largest blindness advocacy group in the country
Tours of the National Federation of the Blind national headquarters
A visit to the International Braille and Technology Center, the largest lab of accessible technology for the blind

Eligibility:
Eligible applicants include those who are in grades 6-9 during the time of the program, or ages 12-16. Students must be able to perform basic self-care skills; have some degree of independent travel skills; be able to read Braille, print, or both; and should, at a minimum, be able to understand content appropriate for students entering middle school or junior high.
National Standards Addressed by this Program (word file)
Applications are due by February 1, 2010: APPLY ONLINE NOW!
For questions about the application process, please contact:Emily NeubeckProject Assistant National Federation of the Blind Jernigan Institute (410) 659-9314, ext. 2419eneubeck@nfb.org
For all other questions about the NFB LAW Program, please contact:Mary Jo T. HartleDirector of EducationNational Federation of the Blind Jernigan Institute(410) 659-9314, ext. 2407 mhartle@nfb.org

Mom update

It's early, early in the morning and I just talked to mom. She sounded GREAT!!!!! Ryan had talked to her yesterday before I had, and reported the same thing. Mom says the eye looks much better now that it's stitched up. It's not bleeding and draining anymore, although it's still swollen. Her vision is improving and is expected to keep getting better as the swelling goes down. There is a chance that they'll have to go back after everything is healed for a little more plastic surgery, but otherwise, everything is going very well. Thank you so much for all your prayers. I'm so grateful to her team of doctors. If they hadn't caught that blood clot, I wonder what would have happened to her vision, or if the clot had gotten loose so close to her brain - it makes me shutter!

Mom says she's been very happy with the care she's had in this hospital. She says they've watched her so carefully and called in any specialist she needed without hesitation. She says even the food has been pretty good. Grin!

I spoke with mom's nurse, who spoke flawless English. Mom says communicating with the medical staff has been no problem. Her doctor actually went to medical school in Seattle and is married to an American woman, so his English is perfect.

I can empathise with our HPS friends that don't speak English and what that's like in a medical setting. There were a few times over the years living in Germany when we had to seek medical care in the German hospital. Usually someone spoke good English, but still, it can be unnerving not to understand what's going on around you when you're ill.

As for me, my sleep patterns are now completely backwards. I've been staying up so I can talk to mom in the morning her time, but late enough in the morning the doctor has been by. I think mom's in the clear enough that I can start working on trying to get things switched back around.

Thanks again to everyone for their prayers and well wishes!

Let's cheer on Maria G!

Maria G. was unable to make it to the HPS Network get together in New England because she was in the hospital. This weekend, however, Carmen and Frankie the Cat got together with Maria and her family. Our reliable Cat got some photos of the event.

Please say some prayers for Maria G. Her paperwork is being reviewed this week by a transplant center. I also think a fundraiser is in the works for her, so when I know details I'll pass those along too.

Mom update

Mom had her third surgery of the week. I don't have a lot of details. I talked to her right before they took her off and she got emotional for the first time. She said it wasn't that she was scared, it was more that she was just so sick of the whole thing. I think those of us who have spent time in hospitals understand that. At a certian point, even if you're feeling badly, you've just had enough of the place and you want to be home.

I spoke to her again in the evening her time. She was sleeping so all she said was that everything was fine and not to worry. I hope that's true. I suspect she needs the sleep as they've been checking that eye every hour since it was so fragile. I'm sure she hasn't slept well as a result. I just told her sweet dreams and let her go back to sleeping.

Role reversal

Thank you so much to everyone who has been praying for my mom. To recount, briefly, for those who do not know, here’s what’s happened.

Last April mom noticed a small bump under her eye. It was tiny, like a little sty, but it bothered her to feel a bump and not know what it was. She saw a doctor, who thought it was nothing.

Mom felt the bump was growing, so when she was home this summer, she saw several specialists here in the United States. They scanned and probed, but couldn’t determine what it was, so they decided it was nothing.

I felt it when she was here this summer, and it felt like a hard cyst about the size of my thumb nail on the bone right under her eye. It was strange, but it caused her no pain.

When mom returned to Germany, she felt the bump was still growing. It worried us both. After all, bumps aren’t supposed to grow. Mom also started having episodes of vertigo, which oddly seemed to alarm me more than her. She was probably putting an act though. She returned to her German doctor who at least confirmed it was growing, and he referred her to a specialist.

They decided the bump should come out before it was so large it affected her optic nerve.

The surgery was Wednesday night our time. It was only supposed to be a few hours. When they got into the operation, however, they found the growth was much larger than they’d expected. The tumor was the size of the surgeon’s thumb.

Instead of the neat non-invasive and little scarring surgery they expected, mom’s surgery lasted seven hours. They had to take apart most of the eye socket of the skull to be sure they got it all. Bone was taken from behind her ear and used with screws and titanium plates to reconstruct the eye socket.

The first day out of surgery mom seemed to be doing well. When I spoke with her she was herself and seemed comfortable and calm.

I called again in the morning German time and was concerned that her speech was very slurred. She told me she’d been throwing up and that they’d just put something in her IV that was making her groggy. I accepted that explanation, being somewhat a veteran of those IVs that make you nice and sleepy and oblivious.

As it turns out minutes after our call the nurses noticed the same thing and the drugs shouldn’t have been causing it. The doctor came to examine her eye and it was hard. By now mom was throwing up uncontrollably.

The doctor ripped out the stitches at the bedside with nothing for pain, and then mom was whisked away back to the operating room. They said it all happened in a matter of about 15 minutes. Mom said she was very scared because it was so clear from the frantic behavior of the staff that something was very wrong.

It turns out she had a blood clot behind her eye.

Now the wound is draining and she simply has a cup over her eye. She says her sinuses have filled with blood that keeps coming out of her nose. But, when I talked to her at dinner time German time she was clear and alert and quite happily eating dinner.

Another surgery is planned for Sunday, assuming things are better drained, to put some stitches back in.

The pathology report should be back in 10 days.

I can’t help but be anxious about what it might show. I am concerned because this growth, whatever it was, seemed to grow so rapidly.

I suppose I’m somewhat more anxious because it’s a kind of role reversal. I’m the one who spends time in hospitals and at doctor’s offices and whose life revolves around test results that at any time could be life altering.

Mom has sworn up and down she doesn’t want me to come. Her nurses tell me she’s fine and not to worry and get on a plane. Still, perhaps I understand better than most what it’s like to wait on those test results and what it could be like to get a bad diagnosis. I have also spent enough time in hospitals over the years to know that having someone around to hear what the doctor is saying who isn’t drugged up, and having someone around to advocate for you when things get hectic, really can make a big difference in care.

At this point, I suppose, there really isn’t much I could do except hover at the bedside with my Purell endlessly wiping down every surface of the hospital room. (After getting a hospital borne skin infection that I’m still fighting two years later, I’ve joined the ranks of the germaphobes.) We’ll see what the next few days and test results bring.

Opportunity for teens interested in learning languages

I'm just posting this for anyone interested.

The U.S. Department of State through the National Security
Language Initiative for Youth (NSLI-Y) provides merit-based
scholarships for eligible American high school students to learn less
commonly taught languages in summer, semester, and academic
year overseas immersion programs.

NSLI-Y encourages all American citizen 15-18 year-olds with any level
of language experience who have a passion for communicating
across cultures, learning languages, and living abroad to apply.

What Languages are Offered?
In 2010/11, there are seven languages: Arabic, Chinese (Mandarin),
Hindi, Korean, Persian (Farsi), Russian, and Turkish.

How do I Apply?
For more information and to apply online, please visit
nsliforyouth.org. Application deadline is December 4, 2009. Address
your questions to: nsliy@americancouncils.org or call 866.790.2086.

Who is Eligible?
- U.S. Citizen
- Currently enrolled high school, or just graduated, 15-18 at the start
of the program
- A minimum GPA of 2.5

The U.S. Department of State, American Councils for International
Education seek broad diversity, including but not limited to ethnicity,
race, gender, geographic location, and disabilities.