NEWSROOM
HPS Network celebrates its 26th Annual Conference
The HPS Network and community celebrated togetherness at the 26th Annual HPS Network Conference, held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. Themed, “Life is Sweet When We Are Together” the event attracted approximately 300...
Resolution introduced in Congress to support Orphan Drug Act
Representatives Butterfield and Bilirakis introduced House Resolution 242 celebrating the success of the Orphan Drug Act and calling for continued support of the legislation. Before the legislation there were only 34 FDA approved treatments for a rare disease. Today...
April 6th to be Hermansky-Pudlak Syndrome Awareness Day!
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...
Million Dollar Bike Ride 2019
Registration is now open for the Million Dollar Bike Ride. Please click below on Read More for more details. Saturday, June 8th, 2019 at 7:30 AM. Highline Park, 31st Street and Chestnut. To register please go to MillionDollarBikeRide.org. Donate to 2019 Million Dollar...
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...
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...
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...
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...
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...
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...
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...
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...
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,...
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...
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...
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...
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...
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,...
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...
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...
Steve Shank shares his HPS story with KARE 11 News
Steve Shank, an HPSer who received a double lung transplant two years ago, shared his story with Minnesota KARE 11 News in July. Steve had hoped to participate as a bicyclist in the American Transplant Games, but sadly had to stay home after being hospitalized with an...
Caren Shank joins with doctors at the University of Iowa to present about HPS
Caren Shank returned to Iowa this past June to join with her husband’s ophthalmologists and give a presentation about Hermansky-Pudlak Syndrome at the 2018 Iowa Eye Annual Meeting. The presentation was called “The Importance of Gene Testing in Albinism – It Is Not...
Join the HPS Network at Outback Steakhouse to eat for the cure
Enjoy a juicy steak and help us fund the cure, Sept. 25 between 4:00 pm to 9:00 pm at the Outback Steakhouse, 901 Route 73 South in Marlton, NJ. Tell the server you’re there to support the HPS Network, and a portion of your bill will benefit us. Enjoy some steak and...
HPS Multidisciplinary Clinic to be held in Mayaguez
A multi-disciplinary clinic for anyone with HPS will be held Oct. 20 at Mayaguez Medical Center in Puerto Rico. The clinic is free, and is a chance for children and adults with HPS to consult with a variety of physicians knowledgeable about Hermansky-Pudlak Syndrome....
HPS moms to gather for third annual Mothers’ Workshop at the HPS Network Conference
Mothers of children with HPS will gather for their third annual workshop Friday, March 8, 2019 at the 26th Annual HPS Network Conference. The HPS Network Conference will be held March 8 – 10, 2019 at the Long Island Marriott in Uniondale, NY. The Mother’s...