Family gathering

We need your support !

As parents of Cohen Syndrome children life can be challenging at times as we navigate finding the best options for our loved ones. Having a child that is 1 of less than 1000 in the world can be daunting with finding the experts to ensure our  loved one succeeds in life.

Every two years the Cohen Syndrome Association provides a family conference with previous locations such as Highbrook Lodge in Chardon, Ohio. Highbrook Lodge is a summer camp operated by The Cleveland Sight Center that serves many populations and ages. Highbrook Lodge was the first camp built in the United States for the visually impaired and blind.  The campground has an air-conditioned hall, heated outdoor swimming pool, outdoor bowling alley, recreation field, marked hiking trails and playgrounds.  Activities include arts and crafts, campfires, chess, music and nature and outdoor education.

This venue provided education for parents and a camp opportunity for the kids that would not get this experience otherwise. Families meet with professionals while the children participate in a safe and fun environment with camp counselors. This event often is the only chance for a family to meet other parents and children of Cohen Syndrome. The Cohen Syndrome Association would like to make this conference more affordable for all families to ensure Cohen Syndrome children have the brightest future.

Raising a child with a rare disease is challenging as there are few medical professionals that would be educated about this rare disorder. Parents must take an active role and have the ability to educate medical professionals and advocate for their child. This gathering also provides a family an opportunity to share their experiences with other parents living with Cohen Syndrome.

Funds raised for this campaign would be used to reduce costs associated with registration fees so families would have funds to pay for travel to the conference. Families travel from  all over the world to attend and we need your support to make this affordable. Families of children with special needs often are financially impacted  due to high medical costs and care expenses.

We are asking for your donation so more families can travel to this special event and we appreciate your consideration. Our goal is to raise $20,000 and we need your support, rare diseases are underfunded with grants and endowments. Our next meeting will be in June 2018 at the Embassy Suites in Beachwood Ohio but we need  help now to ensure we have the funds to make this event affordable for our families to attend.

Please share our story so more families can attend to make a difference in their child’s future.

Lisa McElhinney

Cohen Syndrome Association