Without our members, the OI Foundation could not be the resource the OI community has come to rely on. From funding deserving research projects, to creating support groups, establishing regional and national conferences, and hosting fundraisers, we need your help!
OIF member Jessica Sheridan shared why being a member of the OI Foundation is so important to her and her family in the interview below.
What is your relationship with OI?
My daughter was diagnosed with OI in 2012, 6 weeks after she was born. It was spontaneous, rather than genetic, and at that time we knew no one with OI and had no prior knowledge of what it was. We were put in contact with the OIF, which was a wonderful experience because the resources we were able to utilize and the people we met (both staff and other families) helped us cope and navigate the diagnosis as first-time parents. I wanted to learn more and more about how best to help my child but, in the meantime, I found this network of people who devoted themselves to spread awareness about this rare disease and worked continuously to develop creative ways to raise funds to help the community.
Why is membership in the OI Foundation important to you?
I am constantly amazed by all of the hard work and dedication that goes into all of the events that the OIF community plans, and all of the ways the OIF helps the OI community. At the heart of it all is a dedicated network of people working together to help support those living with OI, which is a cause near to my heart, of course. I have such gratitude for all of the people who care about my daughter. Not to mention, the community is so positive. When you have a loved one with OI it can be difficult, but knowing that there are so many people working together to help and who care is amazing.
Have you ever attended an OIF meeting/ conference/event?
I have yet to attend a conference, but when my daughter was young we planned golf outings in Michigan and Illinois for a few years, which will always hold very special memories to me.
Is there any advice you would give to a new family/member of the OI Community?
When things in life seem unexpected, it can feel very confusing and scary. However, the most difficult parts of life also happen to be the most wonderful opportunities to experience immense love, compassion, and kindness from others. There are so many people to lean on in this community, and people who care and want to help you on this journey we are all traveling together. Don’t feel that you are alone. Reach out to others, don’t be afraid to ask for help and use invaluable resources such as the OIF to help assist you. Go to an event if you can and meet people, or plan an event and watch people come out in droves to show you love and support. There are so many of us out here who are now part of your tribe!
What upcoming OIF program are you most looking forward to and why?
I love hearing about all of the many ways people all over the country are continuously working together to spread awareness. I love the Bone China Tea. I love reading about new grant opportunities and new medical research. It gives me a lot of hope for the future.
The future of the OI Foundation depends on you! We count on the support of our members to help fund research, provide information and support, develop new resources, expand support groups and increase public and professional awareness about OI. Without you, the vision for the OI Foundation once had by a group of parents in 1970 would not have become the resource it is today. From funding deserving research projects, to creating support groups, establishing regional and national conferences, and hosting fundraisers, you’ve been with us through it all.
Please consider becoming a member of the OI Foundation by visiting www.oif.org/membership.
