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 Workshop will begin at noon and run until 6:00 pm. Moms will have a chance to network with one another, talk about the importance of self care and share ways to cope with the many issues surrounding raising a child with HPS. “We have to take care of ourselves so we can be the best for our kids,”  says Becky Nieves, the mom of a daughter with HPS and HPS Network board member, “This is a place to network, and vent and learn with other moms who really do get it.”

Sheila Adamo, LCSW, CADC  will lead the workshop. Adamo is a licensed clinical social worker with an additional certification in alcohol and drug abuse counseling. She facilitates mothers’ workshops, discussion groups and teleconferences for parents of children with special needs. Sheila and her husband are raising 4 children, one of whom has albinism. Ms. Adamo has worked with many different populations in the mental health field. Her passion is working with parents to help them find the tools they need to be successful. Her company, Building Parent Connections, mission is to help parents build a strong authentic connection to themselves and others while raising a child with special needs. Building Parent Connections believes that providing consistent support, education and guidance throughout parenthood will empower parents to be stronger, happier and healthier individuals and parents.

The workshop will begin at noon, but we understand that some families will need to arrive later. Please feel free to join us when you arrive. Child care for the conference does not begin until 7:00 pm, so moms must make arrangements for their children during the workshop. Caretakers might want to take the kids to the hotel pool for a swim, or join the early conference getting-to-know-you sessions that begin at 3:00 pm.

Girl Scout Troop donates to HPS Network

Kylee Brantner’s Girl Scout troop voted to donate left over funds from their year to the HPS Network in July. Kylee is a person with HPS and has done several HPS fundraisers over the years with her friends. The HPS Network is grateful to Girl Scouts of Western Washington Troop 44267! It is ladies like all of you that make a difference!

Share your experiences with spirometry testing


A group of healthcare professionals from the American Thoracic Society and the European Respiratory Society are working together to agree on the best and most appropriate spirometry testing methods. They are asking lung patients from around the world who have taken a spirometry test (a test that measures the amount of air in your lungs and how quickly you can breathe it out) to participate in a short survey about experiences taking the test. If you would like to participate, please go to: https://www.surveymonkey.co.uk/r/spirometry_experience?platform=hootsuite


Share your experiences with home oxygen with the American Lung Association

The American Lung Association is asking patients with all forms of lung disease who are using, or have used, home oxygen to take a survey, the results of which, will be used to aid advocacy work in regard to access and quality of home oxygen. As patients with HPS, and thus patients with vision issues, we have a unique perspective to offer in this discussion. If you are using, or have used, home oxygen, please respond to this survey and share your experiences. https://action.lung.org/site/SPageNavigator/o2survey_other.html

Flor Otero’s transplant story published in the Highlands News-Sun


Flor Otero, who received a double lung transplant in May, shared her story with the Highlands News-Sun and it was published in the June 18th edition of the paper. Otero was able to share about her surgery, raise awareness about organ donation as well as explain Hermansky-Pudlak Syndrome to the general public. Flor says she believes she received a miracle and now hopes to help work on outreach to raise awareness about HPS. You can read the article here: https://www.yoursun.com/sebring/a-new-lease-on-life/article_c2f9e210-05ce-59f6-a56f-10c54d7ac010.html


HPS Network offers wallet card with QR code

The HPS Network is offering a wallet-sized medical health alert card that has a QR code physicians or emergency personnel can scan to instantly be directed to information about HPS, treating bleeding and even some of the key standard-of-care medical papers they might find helpful. The information is in both English and Spanish.

A QR code is a symbol that has a barcode in it. The symbol can be scanned with any number of free applications available for all types of smart phones. Once scanned, the user is taken directly to the information about HPS. This way a person with HPS, or a care giver, doesn’t have to worry about always having a doctor packet with them. They can simply give medical staff this easy-to-carry card. While not a replacement for a medical alert bracelet, it can be kept in your wallet next to your medical insurance card so emergency personnel can find it.

If you would like to request a HPS medical health alert card, please e-mail the HPS Network at: info@hpsnetwork.org


Eat for the Cure at Mama Gina’s in Valley Stream, NY

Join the HPS Network and eat for the cure Saturday, Aug. 18 at Mamma Gina’s Pizzeria, 104 East Merrick Rd in Valley Stream, N.Y. The event will run from 4:00 pm to 9:00 pm.

Mamma Gina’s Pizzeria will donate 20 percent of your bill to the HPS Network if you mention the HPS Network’s event when you order (and remind them when you pay).

It is very helpful for planning purposes if you RSVP at: https://www.groupraise.com/events/62927

Thanks Amber Klein for organizing this event.


26th Annual HPS Network Conference to be held for families affected by HPS


Families impacted by Hermansky-Pudlak Syndrome will gather for the 26th Annual HPS Network Conference, March 8 – 10, 2019, at the Long Island Marriott in Uniondale, N.Y. This year’s theme: “Life is Sweet When We Are Together.”

The HPS Network Conference is a place for families, physicians and researchers with an interest in Hermansky-Pudlak Syndrome (HPS) from around the world to gather for fellowship, education and fun.

The conference includes:

  • Opportunities to meet and network with other families impacted by HPS
  • Educational sessions for everyone from the newly diagnosed, to seasoned veterans. Topics include an overview for those newly diagnosed, women’s health issues, coping with the GI complications of HPS and information about lung transplantation, among others.
  • Updates on the most current HPS research
  • Opportunities to meet the doctors and researchers working to find better treatments, and someday, the cure
  • Sessions designed to be a chance for attendees to have fun with new and old friends
  • Sessions to learn how your family can participate and be a part of the solution
  • Opportunities to participate in HPS research
  • A workshop for the moms of kids with HPS
  • Kids Camp – fun activities and a field trip for kids over five years old (Childcare is provided.)

Spanish language translators will be available.

Limited scholarship assistance is available in some cases. Contact the HPS Network to learn more.

For more information about the conference, please visit www.hpsnetwork.org/conferences or e-mail: info@hpsnetwork.org.

Facebook Event Page


Update the HPS Network on new developments in your health history


Since you registered with the HPS Network, have you updated us about your health history? Keeping us up to date on major developments helps us find you should there be a research development or opportunity that might be applicable to your situation. Have you, for example, learned your gene type? Have you developed any other health issues such as GI complications or lung disease? Have you developed other health issues you might assume are not related to HPS such as arthritis or Lupus? This also helps the HPS Network keep an eye on potential less common symptoms. If we see trends that exceed those in the general population, we are able to alert our researchers and ask if it is worth looking into further. Some types of HPS are rarer than others, and thus the number of people studied is smaller. It is likely there is still much we do not know. You can help by communicating with us about such information. To learn more, or to talk about updating your information, contact Valerie Friedman, Director of Medical Affairs, vfriedman@hpsnetwork.org.

Find the right opportunity to participate in research

Without research, we will never find better treatments, and someday, a cure for HPS. If you would like to participate in HPS research let us know you are interested. There may or may not be an opportunity currently that is the right fit, but it helps if we know you want to participate should the right opportunity come along. You can e-mail Valerie Friedman, Director of Medical Affairs and let her know you’d like to check in to see if there is the right opportunity for you. Her e-mail address is: vfriedman@hpsnetwork.org