Steve Shank shares his HPS story with KARE 11 News

Steve Shank, an HPSer who received a double lung transplant two years ago, shared his story with Minnesota KARE 11 News in July. Steve had hoped to participate as a bicyclist in the American Transplant Games, but sadly had to stay home after being hospitalized with an infection. That didn’t stop him, however, from using his plans for the games as a way to share his story about HPS and about transplantation and organ donation. To watch the interview, go to: https://www.youtube.com/watch?v=yAhkU5y-faI&feature=youtu.be

 

Caren Shank joins with doctors at the University of Iowa to present about HPS

Caren Shank returned to Iowa this past June to join with her husband’s ophthalmologists and give a presentation about Hermansky-Pudlak Syndrome at the 2018 Iowa Eye Annual Meeting. The presentation was called “The Importance of Gene Testing in Albinism – It Is Not Just Academic.” Caren and her husband Steve relocated to Minnesota two years ago after Steve was diagnosed with HPS. He received a double lung transplant at the Mayo Clinic soon thereafter.

Caren presented with Dr. Arlene Drack and Dr. Mark Wilkinson. She shared Steve’s story and why it was so vital to know the specific type of albinism Steve had. Dr. Drack will be at the 2019 HPS Network Conference. We are thrilled to have these allies helping to advocate for HPS screening.

Join the HPS Network at Outback Steakhouse to eat for the cure

Enjoy a juicy steak and help us fund the cure, Sept. 25 between 4:00 pm to 9:00 pm at the Outback Steakhouse, 901 Route 73 South in Marlton, NJ. Tell the server you’re there to support the HPS Network, and a portion of your bill will benefit us. Enjoy some steak and lobster, or some Queensland chicken and shrimp pasta. Or, maybe a salted caramel cookie skillet for dessert. Yummy!

HPS Multidisciplinary Clinic to be held in Mayaguez

A multi-disciplinary clinic for anyone with HPS will be held Oct. 20 at Mayaguez Medical Center in Puerto Rico. The clinic is free, and is a chance for children and adults with HPS to consult with a variety of physicians knowledgeable about Hermansky-Pudlak Syndrome. There are a limited number of appointments available, so don’t wait too long to make yours. Limited transportation assistance is available.

Physician experts will include:

Pulmonary – Dr. Monia Egozcue, Dr. Rosa Roman and Dr. Jesse Roman

Pediatric pulmonary – Dr. Wilfredo de Jesus

Hematology – Dr. Eric Cruz

Gastroenterology – Dr. Felix Rivera Borges

To make an appointment, call: (787) 210-1102 or (787) 236-9873.

For questions you can leave a message for Hilda Cardona at: 1 (855) 754-1040.

 

 

 

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