Send in your Silver!

 

For the past year, in celebration of the 25th Annual HPS Network Conference, members have collected their silver in change jars at home, and at local businesses. Renee McEvoy, CFO of the HPS Network, is asking that everyone send in the revenue from their change jars now to start to pay Network bills for conference. Thanks to everyone who participated in this project!!!!

Families affected by Hermansky-Pudlak Syndrome to gather for 25th Annual Conference

Oyster Bay, N.Y. The Hermansky-Pudlak Syndrome (HPS) Network will hold its 25th Annual Conference March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. HPS is a type of albinism that involves low vision (usually legal blindness), a bleeding disorder, and in some cases, bowel disease very similar to Crohn’s disease. Depending on the gene involved, it may also cause pulmonary fibrosis or a scarring of the lungs. Although it occurs around the world in all ethnic groups, it’s most common among people of Puerto Rican ancestry.

The HPS Conference allows families affected by the syndrome to meet others as well as hear from the world’s leading experts on the syndrome. Sessions include both fun activities as well as serious topics on how to manage living with HPS. Some of the sessions include:

  • Pre-conference workshop for mothers of children with HPS.
  • HPS 101 – a overview of the basics of HPS for new families, or those that need a refresher.
  • GI Wish I Felt Better – a chance for those affected with the bowel disease of HPS to hear about new research and network with peers.
  • Managing the bleeding of HPS – a session presented by a hematologist familiar with HPS.
  • Stand Up and Be Heard – an overview of legislative issues of importance to the HPS community as well as tips on how to get involved and be an advocate.
  • Women’s Health – an overview of the unique medical issues experienced by women with HPS given by an OBGYN experienced in helping women with HPS.
  • Social Aspects of Raising a Child with Albinism
  • Information about preparing for lung transplantation
  • A Top Chef-style cooking contest
  • Zumba classes
  • Information about Orientation and Mobility

Sunday’s program focuses on current research about HPS and includes speakers such as:

  • William Gahl, Clinical Director of the National Human Genome Research Institute
  • Kostas Alysandratos, a fellow at Boston University’s Center for Regenerative Medicine, who will speak about stem cell research.
  • Lisa Young, an HPS researcher at Vanderbilt University, who will give an update on the growing number of HPS Centers as well as HPS research.
  • Samuel Seward, one of the only physicians with a clinical practice for those with HPS, who will speak about the HPS Standard of Care.

To register or to learn about conference scholarship opportunities, contact the HPS Network at: (516) 922-4022 or e-mail: info@hpsnetwork.org.

 

The HPS Network is a 501(c)3 organization serving families affected by Hermansky-Pudlak Syndrome or HPS.

 

HPSers join ATS at Rally on the Hill

Part of the HPS Network team attending the American Thoracic Society (ATS) meeting in Washington DC in May joined members of the ATS to rally for issues of importance to patients with lung diseases on Capitol Hill.

Nancy Lee, board member of the HPS Network, Donna Appell, CEO and Founder of the HPS Network, Ashley Appell, Carmen Camacho, Frankie Feliciano, Candice Sipe, and Crystal Sipe teamed up with physicians from the ATS for meetings with Congressional representatives or their staff.

Issues discussed included funding for healthcare-related federal agencies to matters related to lung health research and environmental issues important to America’s lung health.

Nancy Lee and her team were able to meet directly with Sen. Ted Cruz from Texas.

Kids with HPS to learn circus tricks

Kids may dream about running away to be in the circus, but kids from the Hermansky-Pudlak Syndrome (HPS) community will get to learn some circus skills at the 25th Annual HPS Network Conference, to be held March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. A team from the National Circus Project will be on hand at the kids’ portion of the conference to teach them various circus skills such as juggling and rope tricks.

The kids program includes children with HPS, as well as the kids of adults with HPS or kids of physicians presenting at the conference.

The HPS Network Conference is an annual event that brings together families affected by HPS for support, education, research updates and fun!

To learn more about the conference, or the HPS Network, visit www.hpsnetwork.org

Stem cell expert to present on Science Sunday at the 25th Annual HPS Network Conference

Dr. Konstantinos D. Alysandratos, MD, PhD, will present on Science Sunday to the HPS community at the 25th Annual HPS Network Conference, March 9 – 11, at the Long Island Marriott in Uniondale, N.Y. His presentation will help us understand what different types of stem cells are, and how they might relate to current and future research on Hermansky-Pudlak Syndrome. He will be giving a more scientific presentation to Meeting of the Minds, an invitation-only HPS researcher meeting held the day before.

Dr. Alysandratos is a pulmonary and critical care fellow at Boston Medical Center. He also is part of the team at the Center for Regenerative Medicine at Boston University as part of Dr. Kotton’s lab. He is in the third year of his fellowship and is working on a stem cell model for the study of surfactant protein C mutations associated with childhood and familial pulmonary fibrosis. He received his Doctorate of Medicine from the University of Athens and embarked on his research journey after winning a competitive 3-year scholarship from the Hellenic State Scholarships Foundation. As part of his doctoral work under the mentorship of Dr. Theoharides at Tufts University, he studied the interplay between neuropeptides and cytokines in the pathogenesis of atopic dermatitis and their role on mast cell activation.  He has also contributed to translational discoveries relating to mast cell activation in neurodevelopmental disorders such as autism spectrum disorders that may inform novel therapeutic approaches. Dr. Alysandratos completed his internal medicine training at UT Southwestern Medical Center, during which time he developed his passion for intensive and pulmonary care.

A Run Through History raises money for HPS Network

 

Approximately 80 runners and walkers participated in A Run Through History in Oyster Bay, NY in October, 2017. The event was a fundraiser for the HPS Network and another Oyster Bay, NY-based non-profit Peerpals.org. Peerpals.org helps preschoolers with disabilities integrate into their community through activities and play dates.

Joey Bertolini, the son of long-time HPS Network volunteer Kerri Bertolini, won the race. Laura and Molly Friedman, daughters of HPS Network Director of Medical Affairs Valerie Friedman, came in second and third place respectively in their age groups.

Thank you so much to everyone who participated and made A Run Through History possible!

Appells speak at Sarah Lawrence College

Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome (HPS) Network, and her daughter Ashley Appell, spoke to a class of soon-to-be genetic counselors at Sarah Lawrence College in early December. The focus of the class was genetics in pediatrics.

Donna Appell spoke to the students about the value of non-profit patient organizations as referral agencies. She spoke about the resources organizations, such as the HPS Network, can provide to counselors, as well as their patients. Not only do non-profits like the HPS Network provide emotional support, but they also can provide ongoing information about standards of care, research and new treatment options. Their perspective can identify useful resources that might otherwise go unidentified.

Ashley Appell spoke about the challenges of transitioning to adult medicine with a complex genetic disorder.

“We are always thrilled to speak at Sarah Lawrence College,” said Donna Appell, “We enjoy the students, and their interests and questions, so much. It’s a great opportunity.”

 

Treasured HPS Network volunteer Ann-Delia Bayer passes away

Ann-Delia Bayer, a longtime volunteer with the HPS Network, passed away on Dec. 9th, 2017. She is survived by her husband Robert Bayer and her daughters Katrina and Sarah as well as her brother Timothy (Stacie) Valentine and his children Corrine and Jena.

Bayer was actively involved in HPS Network events, even though no one in her family was affected by the syndrome. For a decade she managed the kids’ dance party on Friday night at the HPS Network conference. The party gives kids affected by Hermansky-Pudlak Syndrome, their siblings and the kids of adults with HPS, a chance to have fun together and get to know one another. Bayer also regularly volunteered at the HPS Network booth at the Oyster Festival, held annually in Oyster Bay, N.Y. and at the HPS Network annual Christmas Concert. Bayer knew the Appell family through their church and started her volunteering with the HPS Network when she heard about the Network’s need for volunteers to help with the annual conference.

“AnnDelia my heart is broken. You were a quiet warrior with the biggest heart of anyone I knew,” says Donna Appell Executive Director and Founder of the HPS Network and AnnDelia’s friend, “You were always so humble and kind. Your thoughts were always about helping others. I don’t want to say good bye. I never will.”

Her family has asked that in lieu of flowers, donations be made in her memory to the HPS Network.

 

HPS Network attends Pulmonary Fibrosis Summit

The HPS Network attended the Pulmonary Fibrosis Summit Nov. 10 – 12 in Nashville, TN. The summit was organized by the Pulmonary Fibrosis Foundation and featured tracks for patients and caregivers, as well as medical professionals. “The content at the Pulmonary Fibrosis Summit was very robust,” says Donna Appell, President and CEO of the Hermansky-Pudlak Syndrome Network, “It was exciting to see so much interest in the genetics behind pulmonary fibrosis, as well as a talk about Hermansky-Pudlak Syndrome given by Dr. Lisa Young.” Appell reported a myriad of potential medications in the pipeline to treat pulmonary fibrosis. That, coupled with other potential therapies such as the use of stem cells, was hopeful for everyone in the pulmonary fibrosis community.Nancy Lee, a board member of the HPS Network and a double lung transplant recipient, also attended the event.

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