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.
The ninth annual Rare Artist competition, held by the EveryLife Foundation, is open and ready for submissions. The contest celebrates the talents of the rare disease community and is open to patients with rare diseases, family members, caregivers and medical professionals. Entries will be accepted through Dec. 7th. There are categories for all ages and two prizes will be awarded per category. To learn more, go to: http://everylifefoundation.org/ninth-annual-rare-artist-contest-now-open/
Becky Nieves, a member of the HPS Network Board of Directors and the mom of a daughter with HPS, recently held an online fundraiser for the Network using www.mixedbagdesigns.com. “This fundraiser was super easy, and it can be done totally online,” says Nieves. Mixed Bags Designs offers tots and bags, kitchen gadgets and electronic accessories. They donate 40 percent of your sales to the HPS Network and offer free tools to use via e-mail or social media to promote the fundraiser. It is also possible to request printed catalogs. Each fundraiser is assigned a unique url and the fundraiser’s manager can check to see what has sold, and who made a purchase. Mixed Bags Designs ships directly to your buyers. “It took about six weeks after our fundraiser closed for a check to come in the mail, and I just forwarded it to the Network,” says Nieves, “I just dropped it in the mail, and that was it.”
Work continues on the part of 237 patient advocacy organizations to try to pass the OPEN Act (Orphan Product Extensions Now, Accelerating Cures and Treatments; HR 1223 / S 1509). The HPS Network is one of the patient organizations supporting this bill.
The OPEN Act offers incentives to pharmaceutical companies to repurpose existing drugs for use to treat rare diseases. Currently, only 5 percent of the more than 7,000 rare diseases have an FDA approved treatment. Many symptoms for rare diseases, like HPS, are often treated with medications that are off label, and thus can sometimes be difficult to pay for. The bill would offer pharma companies an extended six months of patent exclusivity if they work to repurpose medications for use in rare diseases. The sponsor company must demonstrate that the repurposed therapy is designated to treat a rare disease and obtains an approved rare disease indication from the FDA on the drug label. Repurposing drugs is faster, cheaper, and presents fewer risks than traditional drug development.
The legislation has the potential to double the number of treatments available for rare disorders.
Asking your House and Senate representatives to support, or co-sponsor, this legislation is easy. Go to this link and it will automatically locate your representatives as well as provide a ready-made letter you can send them. Just enter your information in the provided fields. http://action.everylifefoundation.org/p/dia/action4/common/public/?action_KEY=22781
The second annual A Run Through History will be held Sunday, Oct. 22nd at 8:30 am at Theodore Roosevelt Memorial Park in Oyster Bay, NY. The event will benefit the HPS Network and PeerPals.org. To participate in the race, there is a $25 entrance fee, plus a $2.50 sign-up fee. Come run, or just walk, with your friends!
The HPS Network is an Oyster Bay-based non-profit serving those impacted by Hermansky-Pudlak Syndrome or HPS. HPS is a type of albinism that causes decreased visual acuity (often legal blindness), a bleeding disorder, and in some types bowel and lung disease.
Peerpals.org is also an Oyster Bay-based non-profit that provides play dates and friendship opportunities between preschool age kids with disabilities and their non-disabled peers in the community.
For more information, go to www.arunthroughhistory.org
Joanne Criblez’s summer camp voice students are giving a concert to raise money and awareness for Hermansky-Pudlak Syndrome (HPS) Thursday, Aug. 10th at the LIU-Post Hillwood Commons Theatre, 720 Northern Blvd., Brookville, NY. The performance is “A Night At The Movies Summer Cabaret” and will feature music from iconic film scores.
Tickets are $10 and available at the door.
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.
The HPS Network is very grateful to her, and all of the campers who will be singing on our behalf. We thank you from the bottom of our lungs!
In July, the HPS Network received a check for $86.56 from www.igive.com – an online shopping mall that allows merchants to donate a percentage of your purchase price to the cause of your choice. Granted, this is not a ton of money, but it will pay for six new patient packets. Everything matters because the HPS Network is such a small non-profit. Thanks for shopping at www.igive.com and please, keep it up! Share it with friends, and ask them to choose the Hermansky-Pudlak Syndrome Network as their charity.
Some of the stores you’ll find at iGive include:
- Verizon (If you go to the Verizon website to pay your bill online, Verizon will donate a percentage of your bill to the HPS Network.)
- Eddie Bauer
- JC Penny
- And, more than 700 other retailers