“Share Your Rare” -Regina

I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action Network (RAN) Ambassadors, Tamra and Jade. Together with representatives from the National Organization for Rare Disorders (NORD), Michelle and Rose, they offered an opportunity to engage with staff from Congressman Markwayne Mullins office. Though the Congressman himself was unable to attend, the opportunity to take advantage of his staff member, Josh, being present was very productive in the effort to spread awareness of topics that impact the rare disease community.

There were approximately 20 individuals from around the state that were able to find their way to Muskogee, Oklahoma. I had no idea what to expect upon arrival. When I walked into that meeting area, something wonderful happened. I knew, again, that I had found a village. A village of others who knew of this journey that so many of us are on. A village that did not necessarily share our family’s diagnosis, but yet, they do share our experiences. Shortly into the gathering, we were asked to share our names, where we were from, and what our association/link to the rare disease community is. One by one, individuals stood up and gave testimony on what they were there because of. Off the top of my head, I can recall hearing about no less than 10 different rare disease diagnoses. Despite the differing diagnosis of each individual, what was beyond clear is the fact that we all have had overlapping journeys to get to where we are. Limited resources, misdiagnosis after misdiagnosis, diagnoses from providers who admit they have no idea where to go next and dismiss the patient—leaving them to “fend for themselves” in a quest to get help. The list goes on and on when I think of how each one of us shares so many factors as we all travel through this journey of living with a rare disease.

Let me testify to you the significance of this experience. For those of you who were able to go to the CCDS Symposium in Austin, or maybe just finished up at the CCDS Workshop in Rotterdam, you’ll get this! Remember when you booked that reservation and you knew you were going to be surrounded by people who share the CCDS diagnosis? When you drove up to the hotel, got out of your vehicle and you stepped inside! Remember that pounding feeling in your chest as you approached the lobby? When you knew without a doubt, as you scanned the room and pinpointed which individuals must belong to the CCDS family, that you had found a place where you were going to be surrounded with unconditional understanding! I remember. I remember the first person I saw was little Rohan and his family. I didn’t know them, but I knew they were my people! We then went up the elevator and when those doors opened, every person before me was there because we all had the same purpose for the visit. We had finally found our village and met our tribe! One hello, handshake or hug after another, our hearts grew in strength, hope, and courage. I will never forget that feeling and I yearn for every new opportunity to do it over and over again.

I am here to tell you that I had a very profound and heart-pumping experience here locally when I walked into Cowboy’s BBQ. I would be lying if I said it was because as a born Texan I merely love the smell of BBQ, which I do. But, this day, this feeling, had nothing to do with food and everything to do with the individuals standing inside that meeting room. I couldn’t even eat the breakfast they were serving because my belly was full of butterflies! I had found it. I had found another village that our family belonged to. I met a wonderful lady who greeted me and we instantly connected! We didn’t even know one another’s story yet, but the connection was undeniable! I experienced the same heart-pumping, soul-cleansing bond that I felt when I met many of you in Austin. That bond and level of camaraderie in its infant stages is of immeasurable value. Plus, I had just found a network within my reach. Daily, weekly, one call away for coffee, lunch, or even a playdate amongst our children!

As an ACD Ambassador, my role is to seed into the NORD organization, identify, then share with my fellow CCDS families resources that NORD provides. I am writing to you to highlight the reality that this gathering reminded me, you don’t have to wait to find someone who shares a diagnosis. You don’t have to save thousands of dollars or travel thousands of miles, and you don’t have to feel so alone on such a challenging journey.

This event was hosted by two individuals who have dedicated their time and energy to the service of others here in our state. They have given selflessly to RAN which is hosted by NORD. If you have never heard of NORD, I’d like to point out their motto, “Alone we are rare, Together we are strong!” In each state, RAN either has a state ambassador in place or needs a volunteer as the state ambassador. These ambassadors organize opportunities such as the gathering that I was able to attend. They work to unite rare diseases of all types in a common mission to support, advocate and educate.

Without any of these programs or individuals, I would be here in Oklahoma, many miles away from all of you, connected to you via Facebook as my village to vent to, celebrate with, and ask questions to. While all of that is awesome and allows us a sense of understanding and at times even being able to find mercy in our journey to be a blessing or a tidbit of information to others by sharing… We are still miles away from a hug, to wipe one another’s tears, or to stand shoulder to shoulder to take action for what our families not only need but what we all deserve. I felt compelled to write today to implore you to reach out locally. Don’t believe for one second that you don’t have a network somewhere within your location. If you don’t already know where it is, please reach out to me at regina@creatineinfo.org! I would be honored to help you find a support network.

There are so many benefits to having a network of individuals who can empathize and sympathize with one another. Not only will it help each of us flourish individually, but it will also help us to stay connected to the important matters that affect each of the millions of individuals living with a rare disease. I know nothing about politics and frankly, I avoid it like the plague! However, after listening in on the information shared over bbq, I now know that I have a very important testimony that needs to be heard on capitol hill. I need my elected officials to know how certain policies that they vote on directly impact the future well-being of our loved ones!

I sat in for four hours and walked out with a passion to do more, be more, and advocate more. In those four hours, we were given information and education to help advocate for our loved ones. Information such as NORD’s “3 C’s to effectively advocate” for our diseases, be Considerate, be Concise, and Connect! I will say, after having my shot at role-playing, I suggested there be a fourth “C,” Composure, because let me tell you—PHEW! Standing in front of a room of strangers giving my testimony was a very heavyweight! I certainly need to advocate and tell my story more often because I could barely get my words past my throat! One thing that Rose said stuck with me, “Every time you tell your story, you are advocating.”

I am certain that everyone reading this material right now has become a professional at telling their story. You are your loved one’s best advocate. How can sharing your story help CCDS make progress? Sharing is the best way you can help our community advocate through education. Every time you share your journey (onset, difficulty in diagnosis, outcomes, future outlooks, obstacles, policy effects, treatments—or lack of) you are sharing details that will raise awareness of the disease, its effect on the lives of you and your loved ones, the policies or practices that have drastic impacts (positive or negative), and the needs of the community as a whole to help achieve progress in diagnosis, interventions, and treatment developments.

We all know the impact of finding one another within our CCDS community! Now I encourage you to go out and find an entire rare disease community to lock arms with. Connect with others who know what your journey looks like, how difficult it is, how things could use improving. Someone who can be a shoulder when you need one close by, or an ear without accruing the long-distance charges.

If by some chance you are rock solid, find no need for a support group because you have the faith of Daniel in the lion’s den or the hope of Moses in the wilderness, ask yourself if you should reach out because somewhere out there, there’s another individual who could use your guidance, strength, and determination. Rather it’s because you know you could use some help, or because you know you can be of help, I want you to know there is a community of rare out there and they need you! Rare diseases of all types need YOU! CCDS needs YOU!

“Alone we are rare, Together we are strong!”- NORD

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