Inhibitor Family Camp
There are currently over 50 camps across the country that serve the bleeding disorders community; however, none address the unique needs of those living with inhibitors. Until now…
This program offers a full weekend of education, support, and fun designed specifically for children ages 6-18 with hemophilia and active inhibitors. Because we understand the value of having a tight-knit unit of support behind these children, Inhibitor Family Camp is also geared towards the entire immediate family.
Supported by an educational grant from:
Friday, Sept. 27th-30th, 2019
The Painted Turtle - Lake Hughes, CA
We can send you reminders when new information is released about the program, such as dates, locations, and the start of open registration.
*If you’ve completed the notification sign-up form in the past, it is not necessary to fill it out again. We keep your information to use each and every year! If your information has changed, please complete this form once again.
(Closes 9/13/19 at 11:59p (EST))
Applicants must pre-register for screening purposes before completing the primary registration requirements.
Acceptance to attend will be determined by CHES as we have many variables to consider. Preference will be given to first-time attendees.
For questions on who can attend and more:
View the Frequently Asked Questions below - Email us at firstname.lastname@example.org - Call (781) 878-8561
What to Expect
Fly into a designated airport in the late afternoon/early evening. Transportation will be provided from the airport to the camp. Dinner and fun the first evening as we settle in and get to know each other.
The following two days will consist of educational sessions, including Management of Inhibitor Treatment, IV Infusion Tips, Grief and Loss, Insurance, and Stress Management. Rap sessions, separate teen tracks and sessions for siblings, and the affected child are offered throughout the weekend. Through these sessions, we facilitate participant learning and self-confidence, establishment of coping mechanisms, and experience peer-to-peer connections to build strong support systems.
The final morning, we have breakfast, closing meeting and sad, sometimes tearful good-byes as we prepare for departure home.
Who can attend?
Children ages 6-18 living with an active inhibitor that have not successfully tolerized and their immediate families are encouraged to attend. Because inhibitors have been known to return after just weeks, months, or years after tolerization, children who have had a successful immune tolerance experience within the past 3 years or less will also be welcomed to attend. Those who have tolerized more than three years ago will be welcomed, as space allows.
My child’s inhibitor has been tolerized? Why can’t we attend?
Typically, children with a tolerized inhibitor can attend “regular” hemophilia camp with few restrictions.
Inhibitor Family Camp is designed for those individuals that are often the only one with an inhibitor at camp, or who can’t attend at all.
Are adults with an active inhibitor invited to attend?
Not at this time. We encourage you to attend Inhibitor Summits and Adult Summits sponsored by educational funding provided by Novo Nordisk.
How often can we attend?
In efforts to give all families a fair opportunity of attending, camp visits are limited to just one per calendar year.
How will this experience be different than Inhibitor Summits?
Inhibitor summits provided by NHF and supported by educational grant funding from Novo Nordisk have been an invaluable experience for individuals and families living with an inhibitor. Summits have provided for so many of us the opportunity to feel as though we belong again in our own community.
Families at summits have often expressed the desire to have more unstructured time with each other to build a stronger community of support. A family camp atmosphere creates a sense of belonging through shared activities and experiences where minds and bodies are engaged.
Where will we sleep?
Each family will have their own cabin with bunk beds. Bed linens, pillows and towels will be provided.
Will the location be accessible to wheelchairs and other mobility devices?
Absolutely! One of the reasons The Painted Turtle are members of the Serious Fun Camps (formerly Hole in the Wall Camps) was selected is because of their long-standing commitments to providing camp experiences to children with serious health conditions. Providing accessible, safe and fun experiences is their specialty. For more information on The Painted Turtle, please feel free to visit their website: www.thepaintedturtle.org
Will there be medical coverage?
The Painted Turtle will have at least one physician and their Nursing Director on duty all weekend.
How much does it cost to attend?
There are no fees associated with attending Family Inhibitor Camp. Travel assistance is available for all eligible participants and their immediate families.
Travel related expenses to include tolls, mileage and parking will be reimbursed. All meals will be provided on site.
What should I bring?
Your child’s factor and supplies, as there will not be any on site. Also bring your enthusiasm and willingness to reach out so we can learn from each other!
Will there be child care available?
One to two counselors will be assigned to your family whose job it will be to show you around the camp, as well as to bring your children to activities so that parents may attend sessions.
What about patient confidentiality?
Information that you share or hear will be treated with the utmost respect and never disclosed without your permission. We want participants to feel comfortable so that we may support one another.