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.
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 store, as well as be entered to win various prizes. The HPS Network received 100 percent of the ticket price.
“Year-round Boscov’s is actively and intimately involved with the non-profit organizations in each of our local communities. It’s important to us that our fundraising efforts remain within our local communities, so we can directly help all of our neighbors,” says Boscov’s public relations office. If there is a Boscov’s store in your area, you can learn more about the program here: https://www.boscovs.com/wcsstore/boscovs/images/html/community/community.html#
or you can contact the corporate public relations office at: firstname.lastname@example.org
The HPS Network donated $1,000 to support the efforts of Dr. Enid Rivera and Dr. Wilfredo De Jesus Rojas to provide a pediatric clinic for children with Hermansky-Pudlak Syndrome in Puerto Rico. The funds went to purchase a spirometer, mouth pieces and nose clips for the clinic. Dr. Rojas is interested in exploring the pulmonary function of children with HPS to see if there is anything we can learn to identify lung disease early.
The clinic is held the third Thursday of each month at the University of Puerto Rico Medical Sciences Campus, Pediatric Hospital in San Juan. The equipment will also be used at a satellite clinic at Mayaguez Medical Center every four months.
Supporters of the HPS Network ate for the cure in September at the Outback Steakhouse in Marlton, NJ. The restaurant donated a percentage of the purchase price of patrons who said they were there to eat for HPS. Several HPS families also attended the event and manned an informational table. The event was organized by Amber Klein and Becky Nieves. The Nieves family also attended, as did Jeff Klein, Yari Alvarado, her mother-in-law and her two children.
Edwin Santiago has partnered with his employer, Dell, to help the HPS Network raise funds to purchase spirometers for post-transplant HPS patients. Spirometry is vital to post-transplant patients because even small changes can be the first tip off to potential rejection or infection issues, sometimes even before other symptoms are felt. Survival rates are better when such complications are treated early! Often, however, spirometers are not covered by insurance. Dell as agreed to match up to $4,000 for the program.
You can donate by clicking on the link below. You do not have to be an employee of Dell to participate. Just register as a guest when prompted.