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 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...

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 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...

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, 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...

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 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....

HPS Network donates funds to support pediatric HPS Clinic in Puerto Rico

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...

HPS Network supporters eat for the cure at Outback Steakhouse

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...