HPS Network outreaches at 2019 American Thoracic Society International Meeting

A team from the HPS Network attended the American Thoracic Society (ATS) Annual Meeting, held May 17 – 22 in Dallas. The group was able to interact with more than 14,000 lung physicians, researchers, and representatives from pharmaceutical companies, at the HPS Network booth in the exhibit hall, and by attending some of the thousands of lecture sessions, scientific poster sessions and special events.

Donna Appell, Founder and Executive Director of the HPS Network, serves on the ATS Public Advisory Roundtable. She organized “speed dating” for early career physicians and researchers at ATS. Groups of five at a time came by each patient advocacy table and got a five-minute presentation about the disorder.

The HPS Network also held a reception for our researchers and physicians attending the meeting to give us all a chance to chat, network, discuss things we’d seen at the meeting that might be relevant to HPS and get to know each other better.

Numerous researchers presented scientific posters on their HPS-related research. Scientific poster sessions are much like a science fair for grownups. Giant ballrooms and meeting rooms are filled with rows and rows of bulletin boards. On each is a poster summarizing an experiment of one researcher, or research team. At appointed times, they stand by their posters and answer questions.

“It’s always exciting to me to look around the exhibition center and just take in how much research is being done on all aspects of lung diseases. Our own research might be a pebble in this sea of knowledge, but you never know what scientist, looking at something completely different, might have stumbled upon something that our researchers get excited about,” says Heather Kirkwood, “It makes me feel a little better as a patient to see so many brilliant people working to help us, and working to help everyone with lung disease around the world.”

The HPS Network team included: Donna and Ashley Appell, Carmen Camacho, Heather Kirkwood, Kristen Brantner and Candice and Crystal Sipe. Nancy Lee helped to prepare for the event, but was unable to attend because of the death of her sister.

 

 

Funding the HPS Conference Focus Group

Save the Date!

Aug 14, 2019 at 8:00 pm ET

We’ve come a long way. Instead of looking for researchers and hoping they will be interested in HPS, we have some of the world’s leading minds in gene therapy and stem cell research working on HPS. We have promising candidate drugs that will hopefully soon advance to clinical trials. Now, we need to fund the conference. The conference isn’t just informative or fun. It’s the place where our researchers come together to compare notes and find ways to work together. It’s where we, the people with HPS, often give samples for research. It’s the place where we inspire the people we need to help us. And, for many of us, it’s the one place where we know we are not alone living with HPS.

We have spent a LOT of our budget this year to take advantage of research opportunities that came along, thus we are very, very short of funds for the HPS Conference. This webinar will be a focus group to gather ideas about fundraising, to learn what the Network can do to help our community fundraise or to get some practical how-to advice if you’ve got a fundraiser in mind. The more brains the better. Join us and help us create solutions. Stay tuned for details about how to log in closer to the Webinar.

Building Your Village: HPS Network Webinar

Save the Date!

Aug, 13, 2019 at 8:00 pm ET

There are lots of times when those of us impacted by HPS, whether we are people with HPS or caregivers, need our community support systems. They say it takes a village, and we need our villages to help us along the way. This webinar will provide information about community resources to look for as well as tips for building your own village, or even major metropolitan area, to better navigate living and thriving with HPS.  Come to listen, or share your own experiences.

Instructions on how to log in to the webinar will be available closer to the event. Look for directions on social media.

HPS Network partners with the ATS Foundation to fund another cycle of HPS research grants

Thanks to the hard work of our members and donors, the HPS Network will be able to partner again with the American Thoracic Society (ATS) Foundation to fund another HPS research grant. The $40,000 per year runs for two years and is funded half by the HPS Network, and half by the ATS Foundation. The ATS Foundation also gives us valuable support and know-how to collect and manage grant proposals and have them evaluated by scientists to select the awardee.

Historically, these grants have been a fantastic investment for the HPS community. Besides the additional funding, some of the research that has significantly moved HPS research forward got its start through this program. Every researcher we have funded through this program is still researching HPS today.

Entries now open for the Rare Artist Awards

The Rare Artist Contest, sponsored by the EveryLife Foundation for Rare Diseases, is now taking submissions for its annual art contest featuring the work of artists with rare diseases, or their family, caregivers, friends, researchers or medical personnel. There are a variety of categories for kids as well as adults in a wide range of traditional or digital media.

Winners receive cash prizes as well as are invited to speak on Capitol Hill during Rare Disease Week.

To learn more, go to: https://www.rareartist.org/2019-art-contest/

 

Theme of 2020 Conference announced

The theme of the 2020 HPS Network Conference will be “Our Vision 2020”. Join us on March 13-15, 2020 at the Long Island Marriott in Uniondale, NY to learn more about living with HPS, updates on medical research, fellowship with others walking in the same shoes and, well, just a lot of fun! Save the date on your calendar. We will update you further as more plans develop.

HPS Network visits the Kotton Lab

The HPS Network visited the Kotton Lab in Framingham, Mass in July to learn more about how the lab is using stem cells derived from the blood of people with HPS to find clues to treat the lung disease of HPS. The lab collected blood samples at the HPS Conference two years ago. The Kotton Lab is known the world over for their stem cell work on a variety of lung diseases. While there, the visitors from the HPS Network learned more about induced pluripotent stem cells, the process to coax them to develop into the desired cell type to be studied and how that process helps researchers understand the lung disease of HPS better. They also got to see some of these cells in the microscope!

The HPS team that was able to visit the lab included: Donna and Ashley Appell, Frankie Feliciano and Carmen Camacho.

Dr. Kotton explained that being able to grow new lungs from stem cells, or even repair damaged tissue, is still a long way away now. Still, the lab is learning much more about what may go wrong in the development of various lung cells in people with HPS. This may help researchers identify new therapeutic targets for future therapies.

Team Brantner outreaches at genetics conference

The Brantner family manned an HPS Network booth at the Annual Clinical Genetics Meeting, April 1-2, 2019 in Seattle. They spoke with people working directly with patients in genetics departments across the country about HPS, how to test for HPS and the services offered by the HPS Network. Kylee Brantner stole the show at the booth as she expertly explained HPS to conference attendees and offered them cookies. (HPS booths typically feature cookies to illustrate the lack of delta dense bodies on HPS platelets.) “Sometimes people would stop by the booth and one of us would start to explain HPS, and they would stop us and ask to hear it from Kylee,” says Kristen Brantner, Kylee’s mom and a board member of the HPS Network. “We actually had some of the conference attendees tweeting us to compliment Kylee on what a great job she did explaining the syndrome,” says Heather Kirkwood, Vice President and Director of Communications of the HPS Network, who manages HPS Network social media and communications. “She really did make an impact on them, and that’s great!”

Be a part of the Million Dollar Bike Ride!

Be a part of the Million Dollar Bike Ride!

The HPS Network will have cyclists participating in the Million Dollar Bike Ride at Highline Park in Philadelphia on June 8th, 2019. The ride is hosted by the Penn Medicine Orphan Disease Center. Cyclists raise money to support their rare disease organizations. If you’d like to support our riders, you can donate at: https://www.hpsnetwork.org/million-dollar-bike-ride-2019/  Stay tuned for more information about our riders!

First annual HPS Awareness Day a great success!

The first annual HPS Awareness Day went above and beyond expectations on April 6th, 2019 as people impacted by HPS around the world took advantage of the day to host fundraisers as well as generate awareness through social media activism.

Some fundraisers were online events through facebook or online t-shirt sales, but some were in-person events such as a pizza party, a movie night and a lemonade stand.

The day was conceived by Kristen Brantner, a board member of the HPS Network as well as the mother of two children with HPS. Sometimes it is hard to bring up the subject or ask friends and family for donations, but having a day makes it easier to talk about HPS.

An awareness ribbon and facebook frame was created by Cassandra Mendez Ocasio and used by many in their social media advocacy on the day. The ribbon is red with black polka dots to represent the delta dense bodies missing from the platelets of everyone with HPS.

Genetic counseling students interning at the HPS Network office created a mascot for the Network that is a ladybug with sunglasses and dubbed, HPShady. People around the world sent in selfies showing off the polka dots they were wearing on HPS Awareness Day.

Approximately $25,000 was raised for HPS on or near the day. The impact was global with participants from all over the US and Puerto Rico as well as places such as France, Turkey, Columbia and Germany.