Puerto Rican Senate to hold hearing on Bill 1127

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 the island are asking supporters to attend the hearing on Feb. 12 at 9:00 am at the Annex of the Capitol. Hilda Cardona and Dr. Enid Rivera have advocated for this legislation that would, among other things: Extend catastrophic...

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 Canada, and is enrolled in an undergraduate program at a U.S. or Canadian institution of higher education. The intent is to enhance educational opportunities for students with albinism while celebrating dedication and outstanding...

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 Hermansky-Pudlak Syndrome decide if this is the right option for them, as well as help them prepare for the process. Advanced planning can save time when time matters most.   Dr. El Chemaly is the Clinical Director of the...

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 people with albinism see was well received at the National Organization for People with Albinism and Hypopigmentation (NOAH) Conference. Bailey is a marketing research analyst for the media industry. He served on NOAH’s Board of...

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 float with 25,000 colorful roses. If you’d like to keep your eyes peeled for Steve while watching the Parade New Year’s Day, the float is titled Rhythm of the Heart and will have an African mask and drum theme. It is float number...

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 winners are notified in the spring. Winners must attend the entire NFB national conference in July to receive their scholarship, however, the scholarship program includes financial assistance to attend. Students interested in...