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 apply, visit:

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 later.

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 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.


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. 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:

or you can contact the corporate public relations office at:

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 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.

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 children.

Dell to match donation dollars for HPS post transplant program

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.


Team HPS attends American Thoracic Society International Conference

A team from the HPS Network attended the 114th American Thoracic Society International Conference in San Diego in May to hear the latest in pulmonary research, and to generate awareness of Hermansky-Pudlak Syndrome (HPS). More than 116,000 pulmonary doctors, researchers, nurses and therapists from 102 countries attended the conference.

The HPS Network manned a booth on the exhibition floor to generate awareness, provide literature to interested doctors and researchers and to answer questions. Volunteers with HPS in the booth showed off their eyes to demonstrate what nystagmus looks like and showed photos of various members to illustrate the varying skin tones in our community.

While some of the team manned the booth, others attended scientific meetings to hear the latest in pulmonary fibrosis research and keep an eye out for developments that might be applicable to those with HPS one day.

Carmen Camacho, a member of the HPS Network’s board of directors, gave a presentation about the benefits of palliative care for patients to one of the conference’s sessions. “Pallative care isn’t just for people who are dying. It isn’t the same as hospice. More patients could benefit earlier in the course of their disease,” says Camacho.

The HPS Network also hosted a chocolate reception at The Melting Pot for HPS researchers and physicians. It is a tradition the Network started several years ago and provides a chance for interested doctors and researchers to network informally in a relaxed atmosphere. It also gives them a chance to connect in person in between the Meeting of the Minds, a research meeting held in conjunction with the HPS Network Conference.

This year’s team attending ATS included: Carmen Camacho, Nancy Lee, Donna Appell, Ashley  Appelll, Demetria Saffore, Kristen Brantner, Candice Sipe and Crystal Sipe.

Dr. Drack, ophthalmologist, to speak at HPS Network Conference

Dr. Arlene Drack, an ophthalmologist from the University of Iowa, will speak to families affected by Hermansky-Pudlak Syndrome (HPS) at the HPS Network Conference, March 8 – 10, 2019 at the Long Island Marriott in New York.

Dr. Drack is a clinician scientist specializing in juvenile inherited eye diseases. She is the inaugural Ronald V. Keech Associate Professor in Pediatric Ophthalmic Genetics at the University of Iowa Department of Ophthalmology and Visual Sciences. Her research focuses on inherited eye diseases that affect children, particularly in the development of novel treatments. She is experienced in subretinal injection of molecules to treat mouse models of retinal degeneration, as well as participating in human trials for retinal disorders. She co-directs both the clinical and rodent electroretinogram services at the University of Iowa. Her clinical practice includes the full scope of pediatric ophthalmology and strabismus, in addition to running specialized genetic eye disease clinics.

Dr. Drack received her BS in biology and philosophy from the University of Scranton and her MD from the Pennsylvania State University College of Medicine. She then did a fellowship in immunology at Det Norske Radiumhospitalet, University of Oslo. Dr. Drack then did her internship at Georgetown University Medical Center and another fellowship at the Ophthalmic Genetics program at the Wilmer Institute at John’s Hopkins University. She did a residency in Ophthalmology at Georgetown University Medical Center… Finally, she did fellowships in pediatric ophthalmology and Strabismus, and in molecular Opthalmic Genetics at the University of Iowa. Dr. Drack even has a video to tell you all about herself! How cool is that?


American Society of Human Genetics announces 2019 Essay Contest



The American Society of Human Genetics announced the question for the 2019 Essay Contest. The annual contest is open to students from around the world in grades 9 – 12. The winning submission will be awarded $1,000 and $1,000 in lab equipment for the student’s science teacher. There are also other prizes. The contest is one of many activities held to celebrate DNA Day, April 25th, 2019. The day honors the completion of the Human Geenome Project in April, 2003 and the discovery of the double helix in 1953. Students won’t be able to enter the contest until January and all submissions are due March 8, 2019 (the first day of the HPS Network Conference in New York.) To learn more about the contest, and to see the this year’s question, go to: