A group from the HPS Network attended Meet the Experts, a patient program held at the American Thoracic Society’s annual meeting by the Public Advisory Roundtable in May. This year’s theme was “The Role of Patients in Advancing Treatments and Cures.” Sessions covered various aspects of participating in research, from what questions to ask to what it means to participate in a patient registry.
After lunch, the audience broke into different groups to discuss their particular disease state. The HPS community spent our time discussing updates in advocacy for continued research and the obstacles we must overcome as a community.
“It was great to have such a turn out from the HPS community at this event,” says Heather Kirkwood, Vice President of the HPS Network, “We all wore our Dare to be Rare shirts so we were very noticeable to the doctors and other patients that attended.”
Those from the HPS community who attended the event were: Donna Appell, Ashley Appell, Heather Kirkwood, Carmen Camacho, Frankie Feliciano, Nancy Lee, Julie Rehman, Karen Tillman, Tommy Tillman, Candice Sipe, Candice Sipe and Eden Brock.
The HPS Network raised nearly $3,500 to help with relief efforts in Puerto Rico after hurricanes Maria and Irma. After being in contact with some of our friends in the medical community regarding what was needed, the Network purchased medical supplies and sent them, with HPS Network Board of Director member Hilda Cardona, to Puerto Rico.
The Appell family helped to encourage donations by offering a $1,500 matching grant.
Puerto Rico has a long way to go to recover from these devastating events. Our hearts and prayers continue to be with our friends and family on the island every day. We know that what we could do is so little compared with so many needs. We look forward to hearing from more and more friends as the situation in Puerto Rico improves.
Make hotel reservations now to attend the 25th Annual HPS Network Conference, March 9 – 11, 2018 at the Long Island Marriott in Uniondale, N.Y. Rooms are $154 a night plus tax with the room rate. The theme of this year’s conference is Our True Colors and the banquet dinner will be a celebration of our 25th (silver) anniversary! Don’t miss this historic, and informative, event.
To make reservations online, go to: http://tinyurl.com/hps252018, or to make reservations by phone call: 516.794.3800. Tell them you are with the Hermansky-Pudlak Syndrome Network Group. Our group code is HYM. If you have downloaded the igive button on your toolbar, and you make the reservation online, a small portion of your bill will be donated to the HPS Network. The igive donation will not work if you go through the igive.com online mall and access the main Marriott reservations page. You must have the igive button downloaded on your toolbar.
Come celebrate the achievements of the last 25 years with us, and help us work toward being out of business by our 50th anniversary!
Joanne Criblez’s summer camp voice students gave a concert to raise money and awareness for Hermansky-Pudlak Syndrome (HPS) Thursday, Aug. 10th at the LIU-Post Hillwood Commons Theatre, The performance, “A Night At The Movies Summer Cabaret” and featured music from iconic film scores.
Joanne Criblez is a long-time supporter of the HPS Network and Ashley Appell’s voice coach. For many years she organized the HPS Christmas Concert with the J-Band as well as music at the HPS Network Conference in New York.
“We can’t say thank you enough to all of the singers that helped out,” says Donna Appell, President and Founder of the HPS Network, “We truly thank you from the bottom of our lungs.”
The Coach Grill and Tavern in Oyster Bay, N.Y. raised funds for the HPS Network by selling t-shirts at their recent pig roast anniversary party. They also recently made the HPS Network the recipient of donations earned through the cocktail of the month! The Coach Grill and Tavern is a long-time supporter of the HPS Network. Thanks so much for your support, and Happy Anniversary!!!!
The HPS Network has set up a Puerto Rican Relief Fund to help Puerto Rico, an island devastated by the ravages of Hurricanes Irma and Maria. The island is home to the largest population of families affected by Hermansky-Pudlak Syndrome, a genetic disorder that involves albinism, low vision and a bleeding disorder. Depending on the gene involved, it can also cause digestive disease and/or pulmonary fibrosis (a fatal scarring of the lungs).
The HPS Network has worked in Puerto Rico for many years and we have many, many good friends and family affected by Hurricanes Irma and Maria. Now, our loved ones on the island must cope with catastrophic damage. The island will need help for months to come. Please join us to raise funds to help in what will be a long process of rebuilding. Your donations are tax deductible. Our only overhead costs are the 2.2 percent the credit card processors charge. The Appell family will match, dollar for dollar, the first $1,500 of donations. To donate, visit www.hpsnetwork.org. Click on the red “donation” button on the opening page. If you donate using a debit or credit card, you’ll be able to put “Puerto Rican Relief Fund” in the field for instructions to the vendor. Or, you can send checks to: HPS Network, One South Road, Oyster Bay, NY 11771. Please put on the memo line “HPS Puerto Rican Relief Fund”.
The HPS Network would like to thank the conference attendees who completed the post conference survey. We had an 11 percent response rate. Here is a peek at some of the results we will be able to share with conference funders and supporters:
- 91 percent reported they learned something at conference they didn’t know before attending the event.
- 94 percent reported they learned something they will share at a future appointment with a medical provider.
- 100 percent reported they learned something that will help them take better care of themselves in the future.
- 100 percent reported they learned something that will help them advocate for their needs, or the needs of their child.
- 64 percent reported they made a medical contact they intend to follow up with in the future.
- 94 percent reported they made a social contact they will follow up with in the future.
- 97 percent reported they would like to attend the HPS Conference again in the future.
- 100 percent of parents with a child over five that participated in the children’s program said the experience was very important for their child.
- 100 percent of attendees said they found the low vision accommodations at conference very helpful for themselves or a family member.
Nearly 300 people with HPS, their families and HPS researchers, met in Uniondale, N.Y. in March for the 24th Annual HPS Network Conference at the Long Island Marriott. The theme, Tune in the Network!
The weekend was kicked off by a first-ever Mothers’ Workshop, given by Sheila Adamo, LCSW CADC. Adamo is the mother of a child with albinism, and now has a company doing workshops for the parents of children with special needs. While the moms were getting to know each other, the rest of their families played getting-to-know-you games and did team building exercises.
Friday evening President and Executive Director Donna Appell gave a Year in Review. She updated the crowd about the year’s events, as well as what is ahead in the next year. And, she had a surprise! A LAUNCH PARTY!!! for Dare to be Rare, a new 501c(3) non-profit devoted to raising money for those with rare disorders and conditions using the Dare to be Rare brand. Other groups will be invited to raise money by selling Dare to be Rare merchandise, and the HPS Network will get a small percentage as the owner of the trademark. The HPS Network’s own fundraising efforts through Dare to be Rare will also continue. The Dare to be Rare jingle was debuted, sung by Candice and Crystal Sipe, Casey Greer, Ashley Appell and Cassandra Mendez Ocasio. Lyrics were passed out and everyone joined in.
Saturday everyone gathered for a 24-year tradition, the HPS Network Family Album. Everyone introduced themselves, told one exciting thing that happened in the last year, and what they were looking forward to most in the coming year. The group then broke into special interest groups such as parents of a child with HPS, adults with HPS, coping with loss interest group.
“I really loved the parent session,” says Kristen Bushaw, the parent of a child with HPS, “It was the first time I didn’t feel alone in this. It was the first time I cried and everyone really knew how I was feeling.”
After lunch, attendees attended breakout sessions on topics such as lung transplantation, raising a child with HPS, a Top Chef cooking challenge, a harmonica playing class designed to strengthen breathing and Zumba!
“I enjoyed the harmonica class,” says Angie Creer, an adult with HPS, “It was a lot of fun and a great way to strengthen your lungs.”
While adults attended sessions, the smaller kids played on a special “Fun Bus” outfitted with lots of things for tumble play. The older kids took a field trip to the Cradle of Aviation museum for a special tour, an IMAX movie and play at the retro video game room.
Saturday evening everyone attended the HPS Network Dinner and were entertained with musical performances, skits and of course, dancing! “After a sometimes emotional and heavy day of sessions, the dinner is a chance to relax and celebrate family,” says Becky Nieves, the parent of a child with HPS.
Sunday is traditionally full of presentations about the medical side of HPS, as well as presentations about current scientific research. Topics such as research on gene therapy, treating bleeding episodes, research on the gastrointestinal complications of HPS and how to keep kidneys healthy were just some of the day’s presentations.
Finally, the conference wraps up with a special photo presentation of the weekend’s events put together by duo Karen and Tommy Tillman.
“One of the best parts of conference is getting to hang out with my HPS family. Just getting to be together and enjoy each other’s company, to me, that’s the major part of conference,” says Emilio Ortiz, an adult with HPS.
Donna Appell, President and Founder of the HPS Network, was recognized by a special proclamation by Governor John Carney and Lieutenant Governor Bethany Hall-Long of Delaware for her work on behalf of people affected by Hermansky-Pudlak Syndrome, as well as those with rare diseases. The proclamation was presented to her at the 24th Annual HPS Network Conference by Jeff and Amber Klein from Delaware. It reads, in part, “Over the course of her career, Mrs. Appell has been guided by her passion for helping those who suffer from chronic conditions and rare diseases, where she has touched the lives of many people.”
The HPS Network is one of several sponsors of The Gordon Research Conference on Lung Development, Injury and Repair, held at Colby-Sawyer College in New London, NH Aug. 20 – 25th. Susan Guttentag, who works on HPS Research, is a Vice Chair of the event. Presentations at the conference examine underlying lung development, injury and repair that contributes to lung diseases such as pulmonary fibrosis. “It is an honor to get to support brilliant minds coming together to explore science that may, one day, lead to better treatments, or even a cure, for Hermansky-Pudlak Syndrome and the many other diseases that impact lungs out there,” says Heather Kirkwood, Vice President of the HPS Network.