RARE Global Advocacy Alliance Member Spotlight: Robin Alexix Powers

Robin Alexix Powers

Organization Name
RareAbility

Disease Affiliation
Ehlers-Danlos Syndrome

Organization Mission

To use research on rare and chronic genetic diseases to bring in collaboration, leading to inclusively push the needle 💉 forward on rare research. To bring all stakeholders together with the power of advocacy to prevent unnecessary complications.

What led you to the rare disease community?
The death of my dear friend, Roswell Park V who died of a rare cancer and the complications from the bone marrow transplant which I advocated that they did not perform. I informed them that a gene therapy would be coming out within the next few months and that he had enough time to live healthily enough until then and that they would have a better chance with the gene therapy over a bone marrow transplant. Even with a full bone marrow transplant with his prior existing history and the fact that it’s a rare cancer his odds were a lot lower than if he had received the gene therapy. The doctors and Dr Park also agreed that this was the best course of action and we all signed a form explaining that I was his advocate and that they were to call me if they made any changes. When I returned from the hell advocating for extra help I found out that he had already gotten the bone marrow transplant. I’m not sure if it was a full match or not but I do know that that’s why he died as I watched him suffering, shaking and clearly weak and in pain.

Last email that he ever sent to me contain the following statement:

“Your advocacy would have changed my life and death.”

The statement will forever be in the back of my mind and will forever drive me to try to find better avenues and cures for patients as well as create an advocacy program as Dr Park and I planned to continue our legacy.

The health of my son, myself and so many I know are suffering. When you wonder if something can be improved, and isn’t the status quo, you CHALLENGE IT! I always think that if I get a no then no harm no foul and I am back to where I started.

Fun fact about me is that I did not come from privilege. I studied for many years, over 10 years. I gained the knowledge that I have through hard work, Advocacy, grit and perseverance.

What do you think are the areas that are lacking in the community (specific to your org or in general)?

I think that there’s not a lot of support for single parents who are rare-givers, even more so in situations of domestic violence. I wish the community would realize that someone is 50% more likely to be abused if disabled. This leads to a connection between domestic violence and disability which must be addressed for us to move forward. Gaslighting is a very common occurrence because of the misunderstanding of rare diseases and the lack of knowledge the public has.

What are your areas of expertise?

Pharmacology, direct patient advocacy, differential diagnostics and most rare diseases that are connected tissue-related. I worked with the NIH in graduate school on EKV and Ehlers Danlos syndrome with my principle who studied gap junctions. 

Please describe any major milestones your organization has hit or has coming up that you are proud of.
Soon we will be getting our 501c3 certification, collaboration with Stronger Than Sarcoidosis and Sarcoidosis of Long Island.

What is your hope for the future for rare diseases?
I hope in the future that the road we pave has a lot more treatments. To bring less heartache and problems for those that are affected. I also truly hope for inclusion and public health policies in schools and in the job market. I truly hope that in the future that those with chronic diseases that are disabled are treated with as much respect as others since we are all people. Hope is useless without action! We must challenge the status quo when necessary. I do hope that the rare disease community realizes that diversity is not just racial and that there are many other hardships that people face such as poverty which can hinder their life and make them less able to obtain a level of well-being.