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Living on the Frontlines

January 2012 - Posts

  • Hermansky-Pudlak Syndrome Network attends New York Thoracic Society meeting

    Donna Appell, President and Founder of the HPS Network, Jackie Falco and Ashley Appell attended the annual scientific meeting of the New York Thoracic Society to man a display about Hermansky-Pudlak Syndrome. The trio was able to speak to pulmonologists from around the state about HPS, a cause of pulmonary fibrosis.

    (Sorry for the small print - Blogger is causing me font problems again.)
  • New phone-in support group for Chediak-Higashi Syndrome

    Parents of those with Chediak-Higashi Syndrome (CHS) will now have the opportunity to chat with one another via telephone once a month. The Jewish Guild for the Blind, in cooperation with the Hermansky-Pudlak Syndrome Network, will host a once-a-month conference call for the CHS community. The call will be moderated by a social worker and will be a free call to those in the United States, thanks to a grant obtained by the Jewish Guild.

    The first call will be held Feb. 28th, 2012.

    For more information, or to participate in the call, contact: Heather Kirkwood, Please put “CHS” in the subject line so your e-mail isn’t mistaken as spam.

  • Job opportunity

    Here's another item I'm just passing along in case anyone is interested:
    Video Description Training for Employment


    Video description is a tool developed to provide blind people with access to visual information portrayed in videos; however, historically the work force in the video description field overwhelmingly consists of sighted individuals. Beginning July 1, 2012, major broadcast and cable networks will be required to provide video description for some television programs. The growing need to produce video-described programming will create new employment opportunities for blind professionals. This workshop will provide participants with some initial training which could potentially make them desirable to companies who provide video description.

    Program Details:

    •Application deadline is March 9, 2012

    •Applicants will be notified regarding their acceptance status in early April

    •When: May 14 to 18, 2012

    •Where: National Federation of the Blind Jernigan Institute, Baltimore, Maryland

    •Who: up to 10 blind adults with the required prerequisite skills

    Travel and room and board will be provided.

    To apply, or to find out about the prerequisite skills desired for participants of this seminar, visit

    For more information about the Video Description Research and Development Center, visit

    If you have questions about this program please contact Natalie Shaheen by calling 410-659-9314 extension 2293, or by e-mailing

  • Writing opportunity for Latina youth

    Latinas Magazine is looking for young women to join its youth editorial board or to submit story ideas/articles. It could be a great opportunity for any budding writers out there!

    Here's the link:


    Youth Editorial Advisory Board


    Latest Activity: Nov 21, 2011

    Share Twitter Facebook

    Youth Editorial Advisory Board

    Young Latinas (ages 13-21) who are interested in developing their writing and multimedia skills and getting published in are invited to apply. This is a great way to get published, get your voice heard, motivate other Latinitas, make an impact and build your resume.

    The Latinitas Youth Editorial Advisory Board is a group of young writers ages 13-21 who assist with writing articles for our magazine, blogging, participating in our online community ( and providing feedback on the direction of the magazine.

    Youth writers are selected through an application process. If you are interested in a career in media or journalism, want to build your writing skills, want to make a difference and want to get published, then this is the perfect opportunity for you.

  • The Wrath of Dr. Khan: ER vs Medicine

    Just in case you need a little smile today.
  • Study Abroad opportunity for blind/low vision youth 18 to 24

    This is another peice of information I'm just posting in case anyone is interested:

    Dear Colleagues & Friends,

    Please RSVP to Dawn Suvino at 646.486.4444, extension 14 or for reservations not CCVIP.

    Thank you,
    Lisa Saunders

    Attention NYC Young Adults with Disabilities
    VISIONS and Mobility International USA
    Invite you to kick-off Summer 2012 in Madrid, Spain!

    Monday, January 30th
    6:00 – 8:00 PM
    At VISIONS at Selis Manor (135 W. 23rd Street)
    Find out how you can be part of a 10-day leadership program with Mobility International USA (MIUSA) this summer.

    Hear from blind participants who have traveled the globe with MIUSA from Costa Rica to Bahrain and beyond!

    Applications will be available & representatives from MIUSA will be on-hand to answer your questions.

    Program is open to NYC residents with disabilities ages 18 – 24

    Generous scholarships available
    Please RSVP to Dawn Suvino at 646.486.4444, extension 14 or

    Parents and other family members, teachers, rehab counselors are welcome to attend.
    Light Refreshments will be served.

  • Opportunity for blind/low vision youth 12 to 16 years old

    This is information I am just passing along for anyone who might be interested:

    The National Federation of the Blind Announces the 2012 NFB Leadership and Advocacy in Washington, D.C., (LAW) Program

    Engaging the Voice of America’s Blind Youth

    April 13-18, 2012

    The NFB LAW program provides blind students with a unique opportunity to explore the inner workings of our country’s government, its history, and its culture. In addition to learning about the history of the organized blindness civil rights movement, how resolutions are passed, and how blindness legislation is created, participants will become familiar with advocacy work for blind individuals and available resources for blind students and adults. Highlights of the program include: visits to historical sites in Washington, D.C., meetings with influential government leaders, and presentations by prominent leaders in the National Federation of the Blind. Read more about this chance of a lifetime in the Summer 2011 issue of Future Reflections.

    Twenty-four students (grades six to nine, or ages twelve to sixteen) will be accepted for the LAW program. All accepted students must be accompanied by a parent/guardian, teacher, or blind/low-vision mentor from their home state. There will be a $250 fee per student/chaperone pair. Transportation, room, and board will be provided for students and chaperones.

    Apply now by going to Applications are due by February 1, 2012. For more information, call (410) 659-9314, extension 2312, or e-mail Natalie Shaheen at

  • Tours for the blind/low vision at the New York Natural History Museum

    This is info that was sent to me - I'm just passing it along:

    Science Sense Tours

    Visitors who are blind or partially sighted are invited to attend this program, held monthly in the Museum galleries. Specially trained Museum tour guides highlight specific themes and exhibition halls, engaging participants through extensive verbal descriptions and touchable objects.

    Science Sense is free with Museum admission.

    Saturday, February 11th, 10:00 AM


    Join our guides on a paleontological adventure through the Koch Dinosaur Wing.
    Science Sense tours are available to individuals or groups.

    Space is limited and advance registration is required.

    Programs may be subject to change.

    For additional information or to register for a Science Sense tour, please call (212)313-7565 or email

  • Recent craft projects

    These are photos of some recent craft projects. The red frame is already spoken for - but I'm asking $12 (including shipping in the US) for the two eggs together, and $12 (including shipping in the US) for the picture frame. If you'd like more info, just get in touch.
  • The benefits of art therapy

    I have done artwork since before I could walk.

    My mom was an art teacher in her first career. She wanted Ryan and I to be creative, so she started early. She would buy rolls of newsprint paper and spread them out on the floor. Then she'd put us on the paper with big jumbo crayons.

    Ryan didn't take to art. I loved it.

    These days I don't get to paint as much as I'd like. I'm always behind on things that just seem more important than my own personal entertainment.

    But when I get to feeling too overwhelmed, somehow the painting helps. It's therapy.

    When I was in the drug trial for Hermansky-Pudlak Syndrome at NIH, waiting for test results always made me anxious. I always packed watercolors and painting helped to pass the time. It helped me think about something besides how life would change if the results weren't good.

    Today I saw this article through a newsfeed I get regarding bleeding disorders. I loved the article and thought it was great!

    It's about how art therapy can benefit anyone dealing with acute or chronic illness.
  • Scholarship opportunity for an undergrad with albinism

    I just got this e-mail from NOAH - the National Organization for Albinism and Hypopigmentation. I'm am thrilled to pass it along!

    NOAH's Michael J. McGowan Leadership Scholarship Award

    2012 Application is now Available!


    The Michael J. McGowan Leadership Scholarship Award was established in 2008 on behalf of the National Organization for Albinism and Hypopigmentation (NOAH) to recognize leadership and empower young people with albinism. NOAH will award one scholarship annually to a NOAH member with albiism residing in the U.S. or Canada who is enrolled in an undergraduate program at an institution of higher education in the U.S. or Canada. The intent is to enhance educational opportunities for students with albinism while celebrating dedication and outstanding leadership qualities similar to those exhibited by NOAH's current and past leaders. The 2012 scholarship award will be $3,000.


    To apply, complete the online application then submit the following:

    •Your personal statement (500 words or less)

    •An eye report documenting a diagnosis of albinism

    •At least two (2) letters of recommendation from non-family members

    •Your academic transcript (including SAT/ACT scores, if applicable)

    •A letter of acceptance to or proof of enrollment at an institution of higher learning


    Application materials for the 2012 McGowan Scholarship must be RECEIVED by May 1, 2012.

    Send all application materials to:

    NOAH McGowan Scholarship

    PO Box 959

    East Hampstead, NH 03826-0959

    Fax: 800-648-2310



    Please contact NOAH's Scholarship Committee with any questions at or 800-473-2310 (U.S. and Canada).

    Applicants will receive notification of the award committee's decision on or around June 1, 2012.


  • PFTs

    I’m thrilled to report that my pulmonary function tests yesterday were largely unchanged! Yippee! I’m particularly thrilled because honestly, I felt terrible. I’ve been having a lot of GI problems the last two weeks. Thursday and Friday my body had finally had enough. If I did that well feeling so yucky and weak, then I’m in good shape.
    When pulmonary function tests come back okay, it’s a great sense of relief. During the last year I’ve watched many of the people I was in the drug trial with decline. Nancy got her lung transplant, and Elsie needs one ASAP. Several others are being evaluated. I have to admit, it makes me nervous. We were all in the same boat not that long ago.
    While I wasn’t expecting any bad news, there’s a part of me that fears the moment I let my guard down, the moment I’m not expecting the bad news, will be the time I learn the pulmonary fibrosis has been creeping up on me.

  • Registration forms are now available for the 19th Annual HPS Network Family Conference

    Registration forms are now available for the 19th Annual HPS Network Family Conference in Uniondale, New York (March 16 – 18, 2012). The forms are currently being mailed to members who have up-to-date contact information in the Hermansky-Pudlak Syndrome patient registry. If you’d prefer to download the form, you can find it at:

    You can also pay online at the HPS Network store at:

  • Resource for those with bowel disease

    The Crohn’s and Colitis Foundation has set up an online archive of Webinars about living with bowel problems. Many of the Webinars are available in English and Spanish. While CCFA does not provide any information about Hermansky-Pudlak Syndrome (it would really be nice if they would as for us, it can literally be life and death), you may find a lot of useful information here. Please consult with your own physician who understands your HPS before making any changes to your care. Here’s the link:
  • Redbox sued over access for visually impaired

    This article came to my attention and I thought some of you would like to read it. This is a growing problem for people with vision impairments. While, as a person with albinism, I can see some of the touch screen technology well enough to use it, there are some I find very difficult to use as well. My blind friends (and sometimes myself) find that as this technology increases in usage, it can be limiting to our independence.

    Personally, when companies use this technology in this way, it's the same thing as setting up a brick and mortar building but making the doors so that a wheel chair can't get through - something that hasn't bee legal in this country since 1992.

    It's never desirable to have to make a court case out of such things, but I fear it will take a number of cases like this to get corporate America's attention.

    My biggest pet peeve are ATM machines. When I'm dealing with my money, I don't want to guess that I'm pushing the right buttons, and I don't want to have to ask anyone for help. It's private!

    I can see most ATMsl, yet it irritates me that several ATMs in my neighborhood have been replaced recently with no attempt to make them more accessable to the blind.

    Okay, stepping off the soap box now.....

    Here's the article for those who are interested:

    Redbox sued over access for visually impaired

    A San Francisco group that advocates for the visually impaired on Thursday sued a company that makes DVD-rental kiosks and the grocery store chain that hosts them, alleging that they discriminate against blind customers.

    The group Lighthouse for the Blind and Visually Impaired said the touch-screens on Redbox rental kiosks, which can be found on the premises of many Bay Area Save Mart and Lucky stores, make it impossible or difficult for visually impaired customers to use the kiosks.

    Read the entire article at:

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