The Puerto Rican Senate will hold a hearing to consider Bill 1127 that would make changes in coverage for those with Hermansky-Pudlak Syndrome (HPS) and other types of albinism that are insured by Reforma, the island’s public health care coverage. Advocates for HPS on...
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Michael J. McGowan Leadership Scholarship application open
The National Organization for Albinism and Hypopigmentation (NOAH) announces that the application period for the Michael J. McGowan Leadership Scholarship is now open. NOAH awards one scholarship annually to a NOAH member who: has albinism, resides in the U.S. or...
El-Chemaly to speak about lung transplantation at the 26th Annual HPS Network Conference
Dr. Souheil Y. El-Chemaly will give a presentation about lung transplantation at the 26th Annual HPS Network Conference, to be held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, N.Y. Understanding the process of lung transplantation will help those with...
Bailey to explain how people with albinism see at HPS Conference
Matt Bailey, a well-known and active member of the albinism community, will give a presentation to explain how people with albinism see at the 26th Annual HPS Network Conference. Bailey is an adult with albinism, however, does not have HPS. His presentation on how...
Steve Shank to ride Donate Life Rose Parade float
Steve Shank, who received a double lung transplant two years ago, will be riding the Gift of Life Rose Parade float on New Year’s Day. He and his family are in Pasadena several days early to participate in pre-parade activities including getting to help decorate the...
National Federation of the Blind Scholarship program open for applications
The National Federation of the Blind (NFB) is offering 30 scholarships in 2019 to legally blind students entering post-secondary programs of study. The scholarships are merit based and range in value from $3,000 to $12,000. Applications are due March 31, 2019 and...
American Council of the Blind has opened its 2019 college scholarship application process
The American Council of the Blind (ACB) Scholarship Program for 2019 is now open. The ACB hopes to award as many as 21 college scholarships to people who are legally blind and who plan to attend a college or university in the 2019/2020 school year. Funds may be used...
Supporters escape to fund the cure
Supporters of the HPS Network took on the challenge of an escape room at The Great Escape Zone in Bensalem, PA to benefit the HPS Network. The event was organized by Yari Alvarado, the mother of a child with HPS. She was able to get The Escape Zone to donate a...
Dr. Samuel Seward to attend the 26th Annual HPS Network Conference
Dr. Samuel Seward, a board member and scientific adviser to the HPS Network, will attend the 26th Annual HPS Network Conference, to be held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. On Saturday, he will participate in the Meeting of the Minds,...
Kleins take part in Boscov’s Friends Helping Friends days
Amber Klein and her dad Jeff Klein took part in a charity event day at their local Boscov’s department store. They were able to sell $5 discount shopping passes for the special charity event day. Buyers were able to get 20 percent off of almost everything in the...