Dear BBS Family Members,
This newsletter is an opportunity to share a lot of good news. Please read the entire newsletter. I promise it has a lot of important stuff!
I am proud to announce that William Barr along with his mom Kristin have worked with Orange Hat Publishing to produce a book called “Will It”. Will It is a story of bravery, courage, and the power we all have within us to overcome our greatest fears. Like all of the stories in the Gnat & Corky Series, Will It is based on the spirit of a real kid. Will is 15, and he has Bardet-Biedl syndrome. That does not define Will or prevent him from doing anything he dreams. His attitude and outlook on life are unstoppable. We can all learn a lesson from Will to fact the world as we are, with a brave heart, bold spirit, and wicked sense of humor!
$1 from each copy of Will It purchased on www.orangehatpublishing.com will be donated to the Marshfield Clinic Health System BBS Angel Fund. Use the code BBSangel at checkout.
Take a look at William and Kristin’s Youtube video at: https://www.facebook.com/gnatandcorky/videos/324035708219636/
Isn’t that awesome! Great job Will and Kristin.
Second piece of good news. We have published a paper on skin disorders in individuals with BBS. The paper is published in the February edition of the International Journal of Dermatology. If you are interested in a copy of the paper please feel free to contact me and I will send the paper to you. Much of the information in the paper is at the CRIBBS website at https://www.bbs-registry.org/bbs-news/skin-health
This paper is written to help you and help dermatologists know more about BBS. Thanks to all that made this paper possible.
Lions Clubs International, the Wisconsin Lions Foundation, the BBS Foundation and the Center of Excellence for BBS at Marshfield Clinic Health System are delighted to announce a FREE BBS family camp at the Wisconsin Lions Camp in Rosholt, Wisconsin August 26 through August 30, 2019.
Lions Clubs International has championed the effort to make a difference for youth and adults with vision impairment and blindness. For more than 50 years, Lions have sponsored camps across the world. Now, Lions is engaging the BBS community to make Lions Camp available to BBS individuals and families.
The Wisconsin Lions Camp will offer a variety of opportunities including outdoor recreation, water sports, goal ball, indoor games, group discussions and much more. New friendships will be made and old friendships enriched. This will be a time for parents to compare notes and share fun experiences, for adults with BBS to discuss strategies for navigating life’s opportunities and for children to have a great time laughing, playing and making lifelong friendships.
The generosity of Lions Clubs International and the Wisconsin Lions Camp will make the camp free to all. Lodging will be provided for families in cabin style arrangements. Adult male and female cabins will also be available. Guide dogs are welcome at Camp. The Wisconsin Lions Camp has an outstanding group of counselors, professional camp leadership and a fully staffed cafeteria.
Enrollment for Camp is for any BBS family or individual, but accommodations are limited and will be reserved on a first come, first serve basis. Apply early. The facilities can accommodate approximately 24 families’ as well as four cabins for 16 men and 16 women.
Frequently asked questions:
- How do I apply?
Fill out the application information at the end of this newsletter and return it to Dr Bob Haws at firstname.lastname@example.org.
- Are there any requirements I have to meet?
The camp is for individuals and families affected by BBS. Other than that, your application will be considered on a first come, first serve basis. Camp administrators will select participants based on cabin availability and an effort to match campers’ age.
- Where is the Lions Camp?
The Camp is in Rosholt, Wisconsin, which is approximately 50 miles from Marshfield. More information about the Camp can be found at www.wisconsinlionscamp.com
- What will attendance at the Camp cost?
The camp, including meals and activities, is free for the entire family. A $25 security deposit will be required if accepted to attend the camp. The deposit will be reimbursed when you arrive at Camp. A trading post on the campgrounds will be available to campers to purchase snacks and some supplies.
- Do I need to pay for travel costs?
Yes, you will be responsible for travel cost; however, we can help you petition your local Lions club or other donors to apply for travel funding.
- What do I do if I take medications or have health problems?
Medications are the responsibility of the campers attending camp. You will be provided with a lockable area to lock up valuables including medication in your living quarters. The Lions Camp does not provide nursing services or other medical care in this program. Emergency medical care is available at local medical facilities. Accommodations for hemodialysis can be arranged.
- If I live outside the United States, can I attend Camp?
Yes, Camp is available to individuals living outside the United States. We would love to have you at Camp! Travel assistance from Lions Clubs International may be available.
- Where is the closest airport to Lions Camp?
Central Wisconsin Airport (CWA) is within 30 miles of Lions Camp. Minneapolis/St Paul (MSP) is the closest major airport and is about 3 hours or 225 miles from Lions Camp.
- What ground transportation is available to get to camp?
A shuttle bus will be available to bring participants from Central Wisconsin Airport. Travel from other locations are the responsibility of the participants.
Please send your application information to Dr Bob Haws at email@example.com. Please do not apply unless you are confident that you can attend the Lions Camp. Please send your application information directly to me at firstname.lastname@example.org.
- Your name:
- Names and ages of individuals in your family wishing to attend Lions Camp?
- What are the ages of individuals in your family with BBS?
- Your address:
- Special needs that you or your family member has?
- Will you need assistance with travel to Lions Camp?
- What is the best contact information for us to reach you?
As always I want to express my most sincere appreciation to all those that support the Clinical Registry Investigating BBS (CRIBBS). If you have been lost to follow up or have never joined CRIBBS please contact us at www.bbs-registry.org or at 877-594-3499. Donations to support our efforts can be made at www.bbs-registry.org/we-need-a-helping-hand. If you are interested in our clinical programs for the care of individuals with BBS and would like more information about coming to Marshfield Clinic please contact Sonia Suda at email@example.com or call 715-389-3235.
Dr Bob Haws
Director, Center for Excellence for BBS
Marshfield Clinic Health System
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