Family Campouts for Bladder Exstrophy

Family Campouts for Bladder Exstrophy

By Thomas Exler

Group photo of the families who attended the 2011 California BEST Campout - Photo courtesy of Doug Kreitz

Each year there are two family campouts for Bladder Exstrophy held in the USA, one in South Lake Tahoe, California and the other one in Northern Indiana

In August of 2002, I was invited as a guest speaker to attend the 2002 California Bladder Exstrophy Support Team (B.E.S.T.) Campout.  That year and every year since it has been held at the Campground by the Lake, in South Lake Tahoe, California and was run then by Doug Kreitz and Rebecca Hunter of California, and still is today.

This was my first family campout for bladder exstrophy, and I was so very impressed with the families in attendance, and it was such a positive experience as well, before even including the natural beauty of Lake Tahoe, that I have flown out from Pittsburgh five additional times to the California Bladder Exstrophy Support Team (B.E.S.T.) Campouts since that first one in 2002, however this time just to have a great weekend in the sun with some amazing families.

Then in 2009, Alice Ambrose organized the ABC Great Lakes Chapter Campout, and 2012 this will be their 4^thyear in

2011 ABC Great Lakes Chapter Campout

existence, and they have come a long way in 4 years.  I was honored to attend the 2010 and 2011 Campouts at Eby’s Pines Campground and RV Park, Bristol, Indiana.

Alice Ambrose used to be a member of the Northwest Bladder Exstrophy Support Group out of Seattle and each year they would hold a campout.   So when she moved to Michigan along with her husband, she wanted to rekindle the campout idea to help the families of the Great Lakes Region or Mid-west Region.

Below are two videos from both 2011 Campouts in Indiana and California

Family Campouts for Bladder Exstrophy – Part 1 – 2011 ABC Great Lakes Chapter Campout

Family Campouts for Bladder Exstrophy – Part 1 – 2011 ABC Great Lakes Chapter Campout

Filmed on location at the 2011 ABC Great Lakes Chapter Annual Family Campout
Eby’s Pines RV Park & Campground, Bristol, Indiana, USA
Friday July 22 – Sunday July 24, 2011

2012 ABC Great Lakes Chapter Campout
Friday July 20 – Sunday July 22 2012
Eby’s Pines RV Park & Campground
Bristal, Indiana, USA

For more information on the 2012 ABC Great Lakes Family Campout
Please e-mail Alice Ambrose at bradnalice@charter.net  

Note check at the end of this blog for a letter from Alice Ambrose

Family Campouts for Bladder Exstrophy – Part 2 – 2011 California Bladder Exstrophy Support Team (B.E.S.T.) Campout

Family Campouts for Bladder Exstrophy – Part 2 – 2011 California Bladder Exstrophy Support Team (B.E.S.T.) Campout

Filmed on location at the 2011 California Bladder Exstrophy Support Team (B.E.S.T.) Campout
South Lake Tahoe, California, USA
Friday August 5 – Sunday August 7, 2011 

California Bladder Exstrophy Support Team (B.E.S.T.) Campout
Friday August 3 – Sunday August 5, 2012
Campground By The Lake
South Lake Tahoe, California, USA

For more information on the California Bladder Exstrophy Support Team (B.E.S.T.) Campout
Please e-mail Rebecca Hunter at racrazymomoffour@gmail.com or got to http://www.californiabest.org/BESTcampout.html 

We hope you will plan to join us at either the ABC Great Lakes Chapter Campout in Northern Indiana or at the California B.E.S.T Campout in South Lake Tahoe, California this summer

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The 4th Annual Summer 2012 ABC Great Lakes Exstrophy Campout!

March 11, 2012

Dear Friends of the Association for the Bladder Exstrophy Community Great Lakes Chapter,

You are invited to join us for the 4^th annual Summer 2012 Great Lakes Exstrophy Campout, which is scheduled over the weekend of Friday, July 20 thru Sunday, July 22, 2012 at Eby’s Pines RV Park & Campground in Bristol, Indiana. Bristol is located in northern Indiana just off the Indiana Toll Road, within 150 miles of Chicago, Detroit, and Indianapolis.

The program is a campout for families dealing with bladder exstrophy, cloacal exstrophy, epispadias and hypospadias. This is a great way to connect with other families, share in similar experiences and know that you are not alone! For a video and pictures from last year’s campout, check out this video on YouTube!: http://youtu.be/fsbev0UZLXM. (You can also open YouTube and search for the video entitled, “Family Campouts for Bladder Exstrophy – Part 1 2011 ABC Great Lakes Chapter Campout.”)

Campsites are still available. Please call Eby’s PinesCampground directly at 574-848-4583 to make your reservation and let them know you are with the “Ambrose group”. Please also call or e-mail me to let me know that you are coming, so that I can have a head count for activities and dinner Saturday night.

If you are interested in coming but don’t want to camp, there are a number of nice hotels about 10 minutes down the road in the town of Shipshewana, IN. The website that can link you to these hotels is at http://www.Shipshewana.com.

We hope to see you there, whether you can stay for the whole weekend or even just part of it! In the meantime, details on the campground amenities can be found at www.ebyspines.com, and more information about the campout can be found in the text below. In addition, please feel free to contact me with any questions or comments about this and any future activities.

Kindest Regards,

Alice Bass Ambrose, R.N., B.S.N.

bradnalice@charter.net

home (616) 895-6375

cell (616) 406-7857

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The ABC is an international support network of individuals with bladder exstrophy (including classic exstrophy, cloacal exstrophy, and epispadias), local parent-exstrophy support groups, and health care providers working with patients and families living with bladder exstrophy. http://www.bladderexstrophy.com

The Great Lakes Chapter of The ABC is a regional network serving the Great Lakes states (MI, MN, WI, IL, IN, NY, PA, and OH) as well as Ontario. Please contact Alice Ambrose at bradnalice@charter.net or (616) 895-6375 if you have any questions or suggestions about future ABC Great Lakes Chapter events.

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Details about the ABC Great Lakes Chapter 4th Annual Summer Campout:

Friday, July 20 to Sunday, July 22, 2012

Location and Facilities:

Eby’s Pines RV Park & Campground in Bristol, Indiana is located in the scenic forests of northern Indiana’s Amish Country. It is just minutes from the Indiana Toll Road.

Campsites include tent sites, full hook-up sites, pull-thru sites, and cabins (see campground website for details about sites and amenities). The campground offers two heated pools, fishing and playground equipment.

Check the campground website, http://www.ebyspines.com/campground/campsites.htm, for 2012 rates.

Eby’s Pines is close to shopping in Shipshewana, museums in Elkhart and Das Dutchman Essenhaus in Middlebury, to name just a few of the nearby area attractions.

Please see their home webpage, http://www.ebyspines.com, to view complete activities offered by the campsite and surrounding area.

Activities:

Join us for a “meet and greet” with other families from our group beginning at 9:30 am on Sat., July 21. We will tentatively meet in the Shady Lane area of the campground, where we have reserved a block of sites under the “Ambrose group.” We then plan to meet again for dinner Saturday evening around 5:30 pm.

Reservations:

Please call the campground directly at 574-848-4583 to make a reservation and let them know you are with the “Ambrose group”. (Eby’s Pines has an on-line reservation system, however that system cannot manage group reservations like ours. Instead, please call the campground directly.)

Location of and directions to Eby’s Pines RV Park & Campground: Eby’s Pines RV Park & Campground is located in the scenic forests of Northern Indiana Amish country. The campground is easy to find-just minutes from the Indiana Toll Road I-80/90) on State Road 120.

Address: Eby’s Pines Campground 14583 State Road 120 Bristol, IN 46507

Phone: (574) 848-4583

Web: www.ebyspines.com 

Approximate driving distances from: Detroit: 120 miles, Indianapolis: 150 miles, Grand Rapids: 90 miles, Chicago: 135 miles, Fort Wayne: 55 miles, Toledo: 105 miles

Directions from Chicago and points west: Following the I-80/I-90 East toll road, take Exit 101 (Bristol Exit). Go South on SR 15 for 2 miles to SR 120. Turn East onto SR 120 and go 3 miles. Eby’s Pines is on the South side of the road.

Directions from Ohio and points east: Following the I-80/I-90 West toll road, take Exit 107 Middlebury Exit. Go South on SR 13 for 1 mile to SR 120. Turn West onto SR 120 and go 3 miles. Eby’s Pines is on the South side of the road.