September 2009 SLN Update e-newsletter & Introduction

Greetings SLNers-
We hope you enjoy this first edition of what we hope will be a regular update  of the activities of the Sibling Leadership Network’s member organizations.  I think you’ll agree that they are doing fantastic work on behalf of brothers and sisters of people with disabilities. While their efforts may be showcased locally and sometimes nationally, their great work is not always known to other sibling organizations or SLN members.
We also hope that this update will serve to keep members informed about issues of common interest to sibling organizations. We also hope that SLN member organizations will provide guidance to readers who wish to start their own organizations.

This newsletter is a work-in-progress and we’ll likely revise the format as we learn more about the interests and needs of SLN members and member organizations. If you have ideas or comments what you’d like this newsletter to offer, please let us know!

For years, we’ve heard that siblings are underrepresented, their perspectives unexplored, and their need for information unmet. We heard that “no one” was interested in supporting siblings. As evidenced by the efforts of these organizations, maybe that is not as true as it used to be…
Although we may have a long way to go, the efforts of these organizations are a sign that this is changing and that you all are a part of that change.
I look forward to hearing from you all,
-John Kramer
PS- If you know of any sibling organizations that might be interested in being part of the SLN, please contact me at
The Sibling Support Project
Contact Person: Don Meyer –

During August, the Sibling Support Project divided its time between spreading the word about our new book Thicker Than Water, Sibshops, grant writing, and surveying older sibs for an upcoming article.  

Thicker Than Water: Essays By Adult Siblings of People with Disabilities was published in late spring and features thoughtful contributions by Emily Holl, Mary McHugh, Rachel Simon, John Kramer, Nora Handler, Kate Strohm, Ann Kaiser, and many others.  We developed a Facebook page for Thicker Than Water that is similar to our new SibNet on Facebook page. Sherry Gray, one of the Thicker Than Water authors, worked with staff from Garrison Keillor’s Common Good Bookstore in St. Paul to arrange a book signing that featured three of the TTW authors from the Twin Cities. According to those who attended, they ran out of room and chairs and funds were raised for local disability-related organizations.

As always, we are busy providing technical assistance to the 260+ Sibshops worldwide. We’re always happy to support the remarkably dedicated individuals who make Sibshops happen for young sibs.  We submitted a grant application to the Administration on Developmental Disabilities for a Family Support Training Project of National Significance.  In our application–titled The Family Mobile Project–we proposed training that would allow us to provide low-cost training on the Fathers Network, Grandparent Workshop, and Sibshop models.  Finally, we surveyed twenty sibs—ages 50+–for an upcoming article on older siblings’ concerns to be featured in Impact, a newsletter published by the University of Minnesota’s Institute on Community Integration.  The results were sobering, and we’ll include an expanded version or the article on our website soon.


Fox Valley Sibling Support Network


Contact person: Harriet Redman –


In the month of September we are beginning our Fall Sibshops and have an adult sibling advisory group meeting. Our director, Harriet Redman, was recently presented with the EP Maxwell J. Schleifer Distinguished Service Award for her service to siblings of people with disabilities and their families. She founded the Fox Valley Sibling Support Network in 1998, a non-profit whose mission is to create the opportunity for individuals who have brothers and sisters with special needs to understand, accept and thrive in their unique family situation and in the community.

We are also planning for events in the Spring. We are hiring Jana Stanfield (international singer, song writer, presenter) to present a Keynote Concert on Friday night April 9 and inviting care givers (especially family care givers & sibs) with a workshop the next morning for Adult Sibs (Nat’l Siblings Day).  Our hope is that we’ll be able to appeal to a much broader audience for the concert, resulting in broader awareness of sibling issues and the workshop on the next day.  The concert will be inspirational and fun, while the workshop will be more informational. 

We are also exploring the addition of a grandparent initiative…but more to come on that.


The Fox Valley Sibling Support Network

September Calendar:


9/15- Adult Sib Advisory Group

Noon—Atlas Coffee Mill


9/24- Sib Shoppe at the

Market on Kensington 4-8 pm

Kensington Dr.— Appleton


9/26- Sibshop on the Farm

11:30 am—4:00 pm

Mulberry Lane Farm-Sherwood


Supporting Illinois Brothers and Sisters (SIBS)


Contact person: Tara Koseniak –


For the month of Aug SIBS started working on a grant. We contine to promote our organization on face book through our group SIBS Network and through our cause “Supporting IL Brothers and Sisters.” SIBS is continuing its fundraising efforts this month through multiple channels. We are meeting with an organization serving people with developmental disabilities that wants to plan a sibling conference in Illinois. We have also decided that we want this event to be a sibshop workshop training. We have also been working with local organizations about setting up their own sibshops.  Easter Seals Joliet, By Your Side-an autism program, and the Bolingbrook/Plainfield special recreation have expressed an interest. We are also currently planning our expansion to different conferences that support adult siblings. 


Supporting Illinois Brothers and Sisters

September Calendar:


9/9- Radio interview with Disability Beat interview about the sibling experience


9/13- SIBS Meeting at University of Illinois at Chicago



10/26- Sibshop hosted by Celebrating Differences


Ohio Special Initiatives for Brothers and Sisters


Contact Person: Michael Henn –


On behalf of Carolyn Knight (ODDC) Tom Fish (OSU) and Michael Henn (OHSIBS), Greetings from Ohio DD Council Grant-funded “Project Support of Siblings” (SOS) at The Ohio State University Nisonger Center & Ohio Special Initiatives for Brothers and Sisters (OhioSIBS). The Ohio DD Council announced recently that it is financing the start-up costs of non-profit corporate formation tax-exempt application & initial outreach for Ohio SIBS through a one-time supplement to Project SOS funding. Director Knight of ODDC is sharing the enthusiasm of Council for this innovative project and its support for a viable and independent Adult Sibling advocacy/service organization. Planning is proceeding for the 9th Annual November conference hosted by Nisonger. Click here for more information:

September 14th will bring the Roll-Out event for Ohio SIBS in Cincinnati, Ohio, carried out in partnership with Project SOS, Hamilton County Board of MRDD, and Partners In Policymaking (ODDC PROJECT). This evening event will welcome all persons who support the role of adult siblings in the lives of their brothers and sisters with disabilities, as well as supportive service providers and advocates. Contact Essie Pederson for more information at .


Dr. Tom Fish (Nisonger) and Joyce Clemons (Ohio Department of Developmental Disabilities and Ohio SIBS) contributed to the following news article by Elizabeth Allen, San Antonio Express News.


(EDITORS NOTE: Tamar Heller, another member of the SLN steering committee, from University of Illinois at Chicago was also quoted in this piece.)


NY Sibs


Contact Person: Emily Holl –


SibsNY is happy to report that over the summer we managed to update our (still) new Web site to make it more comprehensive. Over the past few months, many folks have written in to inquire about services in their local areas, especially upstate. We are

encouraging everyone who is looking to connect with or start sibling services in their local community to post on to share information on local resources. Our blog, is still alive and well with some new content, and now connected to the sibsNY Web site. As we move forward we may further streamline communications so that siblings throughout New York can get the information and support they seek.


Tennessee Adult Brothers and Sisters


Contact Person: Ashley Coulter –


Tennessee Adult Brothers and Sisters (TABS) held the First Annual TABS Conference this past April in Nashville, Tennessee.  There were 65 people registered for the conference and topics covered included Research, Family Dynamics, Caring for the Caregiver, Legislation & Advocacy, and Futures Planning.  Based on the evaluations, everyone really enjoyed the conference – 100% of respondents would recommend the conference to a friend. 


We are currently in the planning stages for the Second Annual TABS Conference in the Spring, 2010.  Our main goal at this point is to continue finding adult siblings across the state and to continue growing this group.  If you would like more information about adult sibling activities in Tennessee, you can register online at or email Ashley Coulter at


The Massachusetts Sibling Exploratory Committee-


Contact Person:


Efforts are underway in Massachusetts to connect existing sibling support groups in the state. While just in the early stages, this group has identified key areas it wants to develop in support of siblings and has begun networking with agencies and self advocates in the state. MA-SEC is also trying to organize a series of “Thicker than Water” book signings in New England.




John Kramer

Steering Committee Co-Chair

The Sibling Leadership Network



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