Progressive Political Organizing & Cystinosis

As you may be aware, I live with an ultra-rare disease called cystinosis. Cystinosis is a metabolic genetic disease afflicting more than 2,000 people worldwide. The disease impacts all the organ systems in the body leading to kidney failure, muscle wasting, diabetes, blindness, pulmonary deficiency, hypothyroidism, and neurological damage.

I was diagnosed with cystinosis at around 10 months old. Little did I or my family know that I would face a lifetime of poking, prodding, nagging, cutting, and examining. And because of living with cystinosis, I have been hospitalized many times in my 27 years on this Earth. I have even had about 13 surgeries some of which were major including my kidney transplant and some that were minor. Furthermore, several times throughout the year I have appointments with specialists including nephrology, neurology, cardiology, pulmonary and others.

Recently, I decided to do more for the cystinosis community and therefore I am volunteering with the Cystinosis Research Network (CRN) and joining their group Future by Design (FBD).

FBD is a group of adults living with cystinosis who’ve come together to pave a brighter future for the children, teens, and adults touched by cystinosis.

Along with my participation in FBD, I plan to continue to be an advocate and work to push people in power to recognize the importance of fighting for those who don’t have a voice and fight for equality.

However, living with cystinosis means that to create change and find a cure for cystinosis, I must be my own advocate and to do that takes time, effort, and money.

One example is an upcoming conference with the Cystinosis Research Network and Future by Design next year in Philadelphia.

At the conference, I will learn new research findings, receive updates from cystinosis organizations from around the world, have the opportunity to participate in research studies, and interact one on one with many of the world expert clinicians treating and researching cystinosis.

Nonetheless and in addition to my work with the FBD and on cystinosis, I plan to fight for Medicare for All, transgender equality, and Free College for All.

Therefore, I humbly ask you to make a small donation to help further my work on these causes.

To make a contribution please go to my gofundme page or if you would like to become a sustaining member of my work and make a small monthly contribution please visit my patreon page.

Categories Cystinosis, TransplantTags , , , ,
%d bloggers like this:
search previous next tag category expand menu location phone mail time cart zoom edit close