Bladder Exstrophy News

News about Bladder Exstrophy published other places

ABC Welcomes Pamela Block as New President

ABC Appoints New President

14128_114205748590559_2144525_n

West Allis, Wisconsin - The Association for the Bladder Exstrophy Community appoints Pamela Block as President. She assumed her role on March 1, 2013, succeeding Thomas Exler who served as President for the past two years.

Pamela Block

Pamela Block

Pamela has considerable nonprofit leadership experience and a passion for, and understanding of, Bladder Exstrophy. Before joining the ABC, she served as Vice President of the consulting division of Comprehensive Health Education Foundation (C.H.E.F.) that helps health and human service nonprofits become stronger and more sustainable in their efforts to eliminate health inequities. She is also a parent dealing with the many hurdles of raising a child with Bladder Exstrophy.

“I am delighted for Pamela to lead our organization. Her knowledge and talent will ensure that ABC will take a proactive role in meeting the needs of the bladder exstrophy community.” said Dr. Jeffrey Niezgoda, President Emeritus and Founder. “As ABC continues to build the services that have been valuable to the association, Pamela will provide the leadership and passion needed to support our mission.”

Ms. Block brings to ABC over twenty years of business and nonprofit experience, including significant roles in leadership, program and organizational development, strategic and business planning and business development. She has been actively involved as a volunteer with nonprofits, most notably for her ongoing fundraising and advocacy efforts on behalf of Chinese orphans living with special needs, and for annual fundraising events to benefit Gilda’s Club. Block attended the University of Tennessee as a business major and received her Certificate in Nonprofit Management from Duke University.

About The Association for the Bladder Exstrophy Community 

The Association of Bladder Exstrophy Community (ABC) exists to enhance the lives of all those affected through education, research, outreach and advocacy. Since 1991, ABC has provided international support through a network of parent-support groups and health care providers by assisting patients and families navigate the medical and psychosocial issues of living with Bladder Exstrophy.

About Bladder Exstrophy

Bladder exstrophy is a complex combination of disorders that occurs during fetal development. This congenital disorder usually involves the urinary, reproductive and intestinal tracts, as well as the musculoskeletal system. The abdominal wall and underlying organs do not fuse properly, and the infant is born with the bladder inside-out and exposed on the outside of the body. Major goals of reconstruction are preservation of normal kidney function, development of adequate bladder storage and function (ie, urinary continence), and provision of acceptable genitalial cosmetic appearance and function. However, this positive medical outcome occurs through great pain and sacrifice on the part of the children and their families. The child with exstrophy undergoes multiple surgical procedures, associated lengthy hospitalizations, and many repeated outpatient visits and treatments, all of which impact the child’s psychosocial, cognitive, and behavioral development.

For information about the Association of Bladder Exstrophy Community, please visitwww.bladderexstrophy.com, email admin@bladderexstrophy.com or call 414-918-9002.

Best regards,
Jeff Niezgoda Signature
Jeffrey Niezgoda, MD
Founder
Angela Kujath
Executive Director
Categories: Bladder Exstrophy News, News from ABC | Leave a comment

World Rare Disease Day – February 28, 2013

Ban-Facebook

The Association for the Bladder Exstrophy Community (ABC) for the first time has become a partner for World Rare Disease Day in the USA.

-

WORLD RARE DISEASE DAY - FEBRUARY 28, 2013

For more information click on the fliers below are go to http://rarediseaseday.us/

Rare Disease Day        RDD_partner (1)        Rare Diseae Day 2013 - Frequently Asked Questions

Bladder Exstrophy is one of about 7,000 rare diseases listed by NORD (National Organization for Rare Disorders)

World Rare Disease Day – 2012 Official Video

For Rare Disease Day Events in your area please click here

-

If you live near Pittsburgh, Pennsylvania:

-

Thomas Exler, President of the Association for the Bladder Exstrophy Community (ABC) will be speaking at a World Rare Disease Day event on February 28, 2013

-

Jamie’s Dream Team / The Global Genes Project / RARE Meetup for World RARE disease Day

Thursday February 28 2013

St. Raphael’s School’s – Multi-Purpose Room

1154 Chislett St

Pittsburgh, PA 15206

7:00 PM to 9:00 PM

“In Your Own Genes, Be Yourself”

For more information please go to: http://jamiesdreamteam.myfastsite.net/events/rare-meetup/
Categories: Bladder Exstrophy News, News from ABC | Tags: , , , , , | Leave a comment

12th Annual California Bladder Exstrophy Support Team Campout – August 3 – 5, 2012

12th Annual California Bladder Exstrophy Support Team Campout

Friday August 3 – Sunday August 5, 2012

Campground by the Lake, South Lake Tahoe, California, USA

2012 California B.E.S.T Campout – South Lake Tahoe – August 3 – 5 2012

CompactCath Co-Founder David Janka, MD

By Thomas Exler

This past August 3-5  2012, 15-20 families living with bladder exstrophy, came  together  in South Lake Tahoe, California, for the 12th Annual California Bladder Exstrophy Support Team (B.E.S.T.) Campout.

Kylee enjoying the new design of CompactCath

This year’s special guest presentation was done by representatives from CompactCath.    CompactCath Co-Founder David Janka, MD  presented along with CompactCath advisor, Misty Blue Foster, LVN, about their new prototype urinary catheter, that is currently in develop stage and hopefully make it to market in a few years.

Co-Founder David Janka, MD presenting along with Misty Blue Foster, LVN

In addition to CompactCath’s appearance,  Rebecca Hunter, The B.E.S.T. Campout Coordinator had all the families in attendance, going from morning to night with activities ranging from traditional picnic games to campfire activities at night, to hiking and beach trips, to educational seminars and rap groups.

Thomas Exler, President of Association for the Bladder Exstrophy Community

If you are reading for this for the first time about the B.E.S.T Campout, I would highly recommend you look into attending the next campout in 2013.

I would also recommend you look into the following 12th Annual California B.E.S.T. Campout pictures on facebook

For more information on the California Bladder Exstrophy Support Team (B.E.S.T.) Campout go to http://www.californiabest.org/BESTcampout.htm

Rebecca Hunter
The B.E.S.T. Campout Coordinator
Phone: 530-677-3157
E-mail racrazymomoffour@gmail.com

The following video was shot at the 2011 California B.E.S.T Campout

Family Campouts for Bladder Exstrophy – Part 2 - 2011 California 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

Next Campout:

California Bladder Exstrophy Support Team (B.E.S.T.) Campout
Friday August 2 – Sunday August 4, 2013
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 go to http://www.californiabest.org/BESTcampout.htm

Categories: ABC Conferences, Bladder Exstrophy News, Camp Programs for Exstrophy | Tags: , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

4th Annual ABC Great Lakes Chapter Campout – July 20-22, 2012

4th Annual ABC Great Lakes Chapter Campout

Friday July 20 – Sunday July 22, 2012

Eby’s Pines RV Park & Campground, Bristol, Indiana, USA

2012 ABC Great Lakes Chapter – Group Photo

ABC Great Lakes Campout

In late July 2012, Alice Ambrose of Michigan, along with her husband Brad Ambrose were honored to again be the hosts for the 4th Annual ABC Great Lakes Chapter Campout, at Eby’s Pines RV Park & Campground in Bristol, Indiana, USA from Friday July 20 to Sunday July 22, 2012.

This year there were 8 families in attendance, with even one family driving across the border from Canada.

To view more additional pictures online from the 2012 ABC Great Lakes Chapter Campout please go to:  http://www.facebook.com/media/set/?set=a.484762318201565.116779.114203991924068&type=3

If you are interested in attending the 5th Annual ABC Great Lakes Chapter Campout at Eby’s Pines RV Park & Campground in Bristol, Indiana from Friday July 26 to Sunday July 28 2013.  Please e-mail Alice Ambrose at bradnalice@charter.net 

The following video was shot at the 2011 ABC Great Lakes Chapter Campout

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

2013 ABC Great Lakes Chapter Campout
Friday July 26 – Sunday July 28 2012
Eby’s Pines RV Park & Campground
Bristal, Indiana, USA

For more information on the 2013 ABC Great Lakes Family Campout
Please e-mail Alice Ambrose at bradnalice@charter.net  

Categories: ABC Conferences, Bladder Exstrophy News, Camp Programs for Exstrophy, News from ABC | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Letter to ABC Membership – June 2012:

Letter to membership June 2012

For .pdf version of this letter, please click here

Dear ABC Supporter,
We’d like to take a moment to explain the new and exciting changes that have been taking place over the past year.  The Association for the Bladder Exstrophy Community (ABC) is heading in a new direction and rebuilding the services that have been valuable to the association in the past.  It’s a new day at the ABC and our leadership team is energized and excited for these new possibilities.

You may have noticed that our organization has been somewhat quiet over the past year.  There was a period of time where our resources were not well managed, and we almost lost our non-profit status with the IRS due to non filing of tax forms. The persons responsible for this mismanagement have been removed from the organization, and we moved our administrative office back to Wisconsin where it could be more closely managed.

For .pdf version of ABC Donation Form click here, and mail to ABC

And now we’re moving forward.

Our first order of business is to re-design our website which will feature a new, closely monitored discussion group. It will also host our blog, updated research materials and articles, and an online  newsletter.  Please contact us with any other ideas you may have. In the meantime, you can view our temporary online blog/newsletter – http://abcupdateonline.wordpress.com/.

Second, effective immediately, membership dues are being eliminated.  Now everyone will have access to all the wonderful resources on our website! We will still require member registration, but there will be no charge. Moving forward, we will be contacting you annually for donations. We will rely more heavily on these contributions, grants, and fundraising activities (including a possible ABC conference in 2013).  Please download the PDF form if you would like to submit a donation now, or visit www.bladderexstrophy.com to make an online contribution.

To take ABC Survey on Surveymonkey.com please check here

Finally, we want to hear from you! Our board of directors has come up with some wonderful ideas on how to move the association forward, but we need your opinion as well. If you have five minutes, please take a moment to click on this link and complete our survey www.surveymonkey.com/s/NJZKBDR  . It will also provide an opportunity to update your contact information so you can remain on our email list.  We will no longer be mailing paper newsletters.

Thank you for your patience as we’ve been regrouping over the last year.  Please do not hesitate to contact our office with any questions. And as always, please let us know if you’d like to become involved with the ABC.   We’d love to have you on board!

Best regards,

Jeffrey Niezgoda, MD, Founder

Thomas Exler, President

Angela Kujath, Executive Director

Association for the Bladder Exstrophy Community

6737 W. Washington Street, Suite 3265

West Allis, WI  53214

P: 414-918-9002

F: 414-918-9001

admin@bladderexstrophy.com

Categories: Bladder Exstrophy News, News from ABC | Tags: , , , , | Leave a comment

Conference: Pull-thru Network National Conference July 26-29, 2012

The Pull-thru Network, Inc (PTN) will be holding their 2012 PTN National Conference July 26-29, 2012

The Pull-thru Network Inc. is a volunteer-based non-profit organization dedicated to providing information, education, support and advocacy for families, children, teens and adults who are living with the challenges of congenital anorectal, colorectal and/or urogenital disorders and of the associated diagnoses.

The ABC leadership believes this information may be of some interested, to some of our members who may possible be interested in attending.

The conference is going to be held at the Dolce Resort and Conference Center near Atlanta, GA in Peachtree City, Georgia.

Below is a copy of PTN News, March 2012 Conference Issue, this is the official Publication of the Pull-thru Network, Inc

Inside PTN News you will find the 2012 Conference Schedule, Hotel Information, Registration Forms.  

Pull-thru Network News 2012 Conference Edition

PTN News – March 2012 – 2012 PTN National Conference issue

Categories: ABC Conferences, Bladder Exstrophy News, Camp Programs for Exstrophy, News from ABC | Tags: , , , , , , , , , | Leave a comment

Create a free website or blog at WordPress.com. The Adventure Journal Theme.

Follow

Get every new post delivered to your Inbox.

%d bloggers like this: