March 2024

The Cohen Syndrome Association is in the planning process for our upcoming family retreat.  We have finalized the cost of attendance for affordability.  If you would like to participate, the cost is $50.00 per person for the event with children 4 and under able to attend free. This minimal fee will include food, program costs, and an optional stay at the camp on a first-come, first-serve basis. 

Camping at Whitewood in Windsor, Ohio will start Wednesday, August 21st, 2024, at 4PM (Meet and Greet) until Sunday, August 25, 2024 at Noon.

There are several hotel options in the area if camping is not your preference or if all space is taken.  Hotel expenses are not included in the $50.00 program cost.

Camp Whitewood features cabins that have bunkbeds with occupancy from 14 to 16 persons.  The registration form will include preferences if a family would be willing to share a cabin.  Families will need to bring their own bedding and toiletries. I would encourage anyone who is interested to visit the camp website to review features of the venue for more information on amenities. Do not register directly on the camp whitewood website as our link is further down the page.

Summer Camp//Windsor Township/Camp Whitewood (4hcampwhitewood.com)

If you can attend, expect lots of laughter, fun, and enjoyment. This will not be the same format as prior CSA conferences, as the focus is to facilitate a retreat designed for making connections and sharing experiences. We are still in the planning process and will post updates soon.  Corporate Kids will have a CS camper program on Friday and Saturday from 9AM until 4PM. We are in contact with the DDC Clinic and are working through details.

  Please register as soon as possible to ensure we have accurate attendee information, as there will be deadlines when the event becomes closer.  The children’s program is limited to 30 attendees, so do not delay the registration process.

CSA Announcement:

I have a special announcement from the Board of the Cohen Syndrome Association.  This will be the last gathering under the umbrella of the CSA.  After much thought, it has been determined that the Cohen Syndrome Association (started in 2008) fulfilled its Mission Statement! Our goal was to connect families so any new parent of a CS child would not feel alone and isolated. We started with five families who gathered around a lunchroom table in Ohio, and we did not know where the journey would take us.  There is now a global connection among families who can connect with each other for support and advice.  The CSA has been an amazing experience to be a part of over the years, but it’s now time to take a bow and let the future unfold for new ideas and discovery.

Donations:  Effective August 1st, 2024, the CSA will no longer accept charitable donations. You may consider donating to either the DDC Clinic or Cohen Syndrome Research Foundation.

New Beginnings for Cohen Syndrome:

We are thankful for the launch of Cohen Syndrome Research Foundation with their mission statement of improving the lives of Cohen Syndrome individuals and their families by supporting and advancing research.

I appreciate that our announcement regarding discontinuing the CSA may be surprising, but we feel our mission has been accomplished and we have made a positive impact for Cohen Syndrome families.  We know the future is bright for CSRF with the focus on research, which in turn will benefit many families in the future.  The CSA Board can now retire our mission, while others can continue this important work for a better understanding of Cohen Syndrome.

In closing, our hope is that with the low cost of this gathering, many of our CS families will attend this final event provided by the CSA.

Please participate if you are able and we hope to see you in Ohio!

Link to register for event here!

Lisa McElhinney

President

Cohen Syndrome Association