Welcome

Mission

Join us in our mission!

We want all people with Prader-Willi Syndrome living in New York state to have the hope and support they require through the advocacy of the Prader-Willi Alliance of New York, Inc. (PWANY).  Click on the Membership link above.

 

Highlights

  • Understanding Supplemental Security Income (SSI) – New information for PWS. Click on Resources above.
  • PWANY, Inc. Board of Directors is pleased to announce that on Monday, October 21, Catholic Charities Disabilities Services opened their fifth residence specific to the needs of individuals with PWS.  The residence is home to two men with genetic Prader-Willi Syndrome and one with behavioral issues around food that requires the same level of care and environmental modifications. The home is located in Rotterdam, a suburb of Schenectady, about 15 minutes west of Albany.
    A few years ago the PWANY Board advocated heartily on behalf of a family by assisting them on behalf of their son who was having challenges in a non-PWS specific home. The opening of this residence was due in part to that strong advocacy. New residential development is a rarity in the current OPWDD fiscal climate, this was quite a coup on the part of all of us. Thanks again for all your support and assistance in making this happen!
  • We’re going Green!  Please click on the link above to add your name to our mailing list.  Once registered you will begin to receive our newsletter via email.  Stay connected and informed!

We have a new mailing address!
Prader-Willi Alliance of NY, Inc.
244 5th Avenue, Suite D-110
New York, NY  10001

 

Blogging

We welcome your comments, insights and concerns on the pages of our website.  You can also share your thoughts and discuss issues on our blog page.  See the link above.

 

Prader-Willi Alliance of New York, Inc.

10 Responses to Welcome

  1. Donna F McClain says:

    My child is 16 yrs old and has PWS. I don’t know what to do . It hurts me to see him struggle with food.

  2. Donna Deane says:

    I am looking for future placement in a group home for my brother who is 51yrs old. He
    currently lives with our mother in Staten Island, NY. Are there any group homes for older adults with PWS in the NY/NJ area?

  3. barmcm says:

    Have you applied at the DDSO in your area? Openings are based on availability and need, but you have to be on the list.

  4. My grandson is going to be 12 yrs old and going in for surgery on his spine in Nov 2013.
    I would like to know if there is any help in paying for the operation and hospital stay as well as recovery. My daughter-in-law and son needs a place to stay for this and it will be in NYC.
    Can you please help.
    Thank You

  5. Nina Donato Roberto says:

    Hi Ms. Fletcher. We do not have funding for assisting with hospital fees but we do have a recommendation. Shriners hospital for children in Philadelphia will accept insurance as full payment. They don’t reject on inability to pay. If you like, you can Make an appointment with Dr. Harold Van Bosse. He is a pediatric ortho and works with children with PWS. He has performed numerous scoliosis surgeries on children with PWS. Here’s the phone number. 800-281-4050. X 4073. I u derstans that the surgery has already been scheduled but unless your daughter-in-law has it done in a hospital that is not for profit, there may be out if pocket expenses. Regarding a place to stay, hospitals usually have a family housing program that can offer a hotel at a reduced cost. There may also be a Ronald McDonald house near by where they could stay. Please let me know if this information is helpful and feel free to contact me any time. 718-846-6606

    Warmly,

    Nina

    Nina Roberto
    PWS Family Support Services Coordinator Catholic Charities
    PWS Spanish Speaking Specialist PWSA,(USA)

    Sent from my iPhone

  6. Nina Donato Roberto says:

    Dear, Donna. Please call me. I would love to help in any way I can.

    Warmly,

    Nina Roberto
    PWS Family Support Services Coordinator PWANY and
    Catholic Charities Disabilities Services

  7. Nina Donato Roberto says:

    Dear Ms. Deane, please contact me as well. I will help and lead you to the right direction.

    718-846-6606
    Warmly,

    Nina Roberto
    FSS Coordinator for PWANY and Catholic Charities

  8. Steve Kaufman says:

    Alex has been doing pretty well lately (thankfully).

    A while back, you may remember, I brought in a “hands-free” shoe that I was developing to one of the monthly meetings in Mineola.
    I originally thought of the idea because Alex was in a scoliosis brace and couldn’t bend over in it to put his shoes on -that was over 5 years ago.

    When I say they are “hands-free” it is because you simply step into the shoe and they automatically fasten without the need to bend over or use your hands. Plus, unlike a flip-flop or Crocs, they offer terrific support. Obviously, they are not only helpful for our kids in scoliosis braces, but can make it easier for our PW loved-ones who are struggling with weight problems, as well as people with all sorts of conditions that make it difficult to put their shoes on.

    I plan to eventually open an assembly and distribution center in the Bronx to help provide employment opportunities for people with disabilities. See article here: http://www.dnainfo.com/new-york/20130918/riverdale/entrepreneur-designs-stylish-hands-free-shoes-for-disabled-people#slideshow_modal_slot_1

    Well, I’m finally about to go to market with the shoes and have launched a crowdfunding campaign in the hopes to raise enough funds to pay for the final tooling to go into production and where people can pre-order them at a discounted price for delivery in February or March. The link to the campaign is here: http://www.rockethub.com/projects/27769-support-hands-free-shoes-for-the-physically-or-cognitively-challenged

    Any help to push this forward would be appreciated.

    Thanks so much!

    Kind Regards,
    Steve

  9. Hi!!! I`m Teacher at Elementary School . I live in Mèxico and one of my students has a PWS. I want to know if you have some information about the comunities or medical institutions here. She needs special support in all aspects. I try to give it, but i think you have a better orientation. Thank you.

  10. Nina Roberto says:

    Hi, Marcela…You can try the international PWS website at http://www.ipso.org there should be a delegate in Mexico that can help you.

    Best Regards,

    Nina

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