This year the Hermansky-Pudlak Syndrome community is celebrating the first-ever Hermansky-Pudlak Syndrome Awareness Day! The day is devoted to generating awareness of the syndrome, as well as awareness of the problems we must overcome to find better treatments and a cure.
Keep checking the HPS Network social media for the launch of our awareness ribbon. We hope you will also support our online social media campaign.
The HPS Network’s facebook page is: https://www.facebook.com/hpsnetwork/
You can find us on Twitter at: @HPSNetwork
You can find us on Instagram at: HPS Network
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 coverage for HPS to affected adults,
- Do away with the need for referrals before those affected by HPS can see relevant specialists such as hematologists or pulmonologists,
- Make it unnecessary to seek exemption from laws regarding car window tinting every single year since the need for those with HPS does not change.
For more information on how to participate in the event on Feb. 12th, call Hilda Cardona at: (301) 974-7108.
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 leadership qualities similar to those exhibited by NOAH’s current and past leaders.
The 2019 scholarship award is $3,000.
NOAH established the Michael J. McGowan Leadership Scholarship Award in 2008 to recognize leadership and empower young people with albinism. For more information, go to: https://www.albinism.org/leadership/
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 Center for LAM Research and Clinical Care and a physician at Brigham and Women’s Hospital (BWH). He is also an Assistant Professor of Medicine at Harvard Medical School. His lab is also currently researching Hermansky-Pudlak Syndrome.
He received his medical degree from Saint Joseph University (Beirut, Lebanon). He then completed a residency in internal medicine at St. Luke’s-Roosevelt Hospital Center, a teaching affiliate of Columbia University College of Physicians and Surgeons. He also participated in two fellowship programs in pulmonary and critical care: the first at the National Heart and Lung Institute (now the National Heart, Lung, and Blood Institute), and the second at the Jackson Memorial Hospital. He is board certified in critical care medicine, internal medicine and pulmonary disease.
Dr. El-Chemaly’s clinical interests include interstitial lung disease, lung transplantation and lymphangioleiomyomatosis (LAM) and Hermansky-Pudlak Syndrome. His recent clinical research examines the impact of interstitial lung abnormalities on mortality and lymphatic vessel formation after lung transplantation. He has written over 30 peer-reviewed publications and has received funding from the National Institutes of Health.
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 Directors from 2000 to 2006 and as an advocate for biopic driving. Matt and his wife Meliké, who also has albinism, live in Chapel Hill NC with their daughter.
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 16. The parade begins at 11:00 am ET. Networks that will broadcast the parade include: ABC, NBC, The Hallmark Channel, Univision, RFDTV and the Armed Forces
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 scholarships should also check with their state affiliates of the NFB. Many offer additional scholarships to students in their states. To learn more about the scholarship program go to: https://nfb.org/civicrm/scholarships/login
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 for tuition, room and board, the purchase of adaptive technology or to ease the financial burden so students can devote more time to study. Scholarships are awarded on the basis of merit. Applications are due Feb. 15, 2019. To apply, visit: www.acb.org/2019-scholarship.
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 percentage of the cost of Escape Room packages bought by customers who said they were there to support the HPS Network. Packages had to be purchased by a certain date, but could be used later.
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, an invitation-only scientific meeting for doctors and researchers working on Hermansky-Pudlak Syndrome (HPS). On Sunday, he will present information about the standard of care for people with HPS.
Dr. Seward received his M.D. from the University of Texas Southwestern School of Medicine in 1990. He joined the Sinai faculty, for the first time, in 1994, as an Associate and, later, Program Director of the Combined Internal Medicine-Pediatrics Residency. In 2004, he joined the faculty of Columbia University Medical Center, ultimately rising to Associate Vice President of Columbia Health which provided a broad array of outpatient services and programs to the Columbia community. Dr. Seward returned to Mount Sinai in 2016 as the Site Chair, Department of Medicine, Mount Sinai St. Luke’s and West hospitals. Dr. Seward is internationally known for his work with the Hermansky-Pudlak Syndrome patient population; He was the winner of the HPS Network’s Doctor of the Year award in 2010. In addition, his clinical interests include the care of adult patients who are survivors of congenital and pediatric disorders.