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 global conference where families can get the latest information and updates about Cohen Syndrome. During the conference children can participate in fun activities, make new friends and connect with each other. This conference is held every two years in Cleveland, Ohio area where medical experts are located. The 2018 conference was held at the Embassy Suites in Beachwood, Ohio and former locations include Highbrook Lodge in Chardon, Ohio and the DDC Center in Middlefield, Ohio. Families traveled from 13 states, Canada and New Zealand to attend the event.
Covid 19 delayed the 2020 in person conference and we held our first zoom conference in June 2021. Our next online conference will be held on June 10, 2023.
We are in the process of planning our next in person conference and need your support. Raising a child with a rare disease is challenging as there are few medical professionals that are educated about this rare disorder. Parents must take an active role and 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. The Cohen Syndrome Association needs funding to ensure future meetings occur.
Funds raised for this campaign would be used to reduce the costs associated with registration fees so families would have the 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 are often 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 gift. Our goal is to raise $50,000 and we need your support, rare diseases are underfunded with grants and endowments. Our next in person meeting will be in 2024 in Cleveland, Ohio.
We appreciate your support and please share our story.
Lisa McElhinney
President
Cohen Syndrome Association
