It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here.
Parent Advocate | Blount’s Disease
Why did you become an advocate for your rare disease community? What was happening in that community that made you want to take action?
When Anneliese was diagnosed at 18 months I was a young mother with no support. I felt alone, and afraid. I googled and searched as much as I could on this condition and research lacked. I wanted to make sure other parents in the future didn’t feel the same way I did.
What was your first success or defining moment as a rare disease advocate?
When other parents from outside the United States were reaching out to me thanking me for being such an inspiration and staring a community group for Blount’s and for being the voice for these kids.
Share some of your biggest accomplishments as a rare advocate?
Having our voices heard. Getting the opportunity to come across a former football player from Dallas Cowboys who has Blounts Disease as a child and having the opportunity writing a story on him and sharing his experience. Also getting a petition proclaimed for Blount’s.
Share some of the hard realities you faced advocating for your rare disease.
Having no answers. Or being told nothing was wrong with your Child. Not having the support you thought you would have from your friends and family members. People may get tired of me posting and sharing, but I’m sure there is at least one person out there who was needing to hear or read what I shared for that day.
What project(s) are you working on now for your community?
We just got a Proclamation awarded for Blount’s Disease Awareness day on March 26, 2017 in the state of Kansas. Working on getting the community together to wear Blue in support of this day. We also have our Bottlecaps4Blounts project going making custom made Keychains for those with different diagnoses.
What advice would you give to an advocate just starting out?
Always ask questions and when doing research make sure what you are sharing is backed up by credible resources.
Why do you find working with advocates from different disease groups beneficial?
We as a rare community need to stick together and support one another no matter the journey. Coming together can raise that much more awareness for Rare Diseases.