The results of the Phase 2 trial into the drug, Vosoritide, that could reduce the health complications of children with Achondroplasia was published in the New England Journal of Medicine on Tuesday 18th June 2019.
Achondroplasia is a genetic bone disorder and is the most common of the conditions causing dwarfism with around 70% of people with dwarfism having this condition. The vast majority of children born with achondroplasia, around 80%, will have average-height parents and the genetic condition will have occurred spontaneously.
People with dwarfism live normal lives; working as doctors, lawyers, accountants, teachers and shop assistants; enjoying and taking part in the same hobbies and leisure activities as the rest of society; living in families with people of average height or short stature as their partners, husbands, wives, brothers, sisters and children.
A number of children and adults, with Achondroplasia, experience health complications as a result of their condition. These include; spinal cord compression, spinal curvature, bowed legs, joint pains and problems with the inner ear.
As a support charity we are passionate about changing society for the better, so that people with dwarfism can have the same opportunities as everyone else. Our purpose is to ensure that all people who are affected by dwarfism are equal in society. We would therefore support any medical advancements that reduce the health complications of people with achondroplasia, avoid surgery, remove chronic pain and allow people to live every aspect of their lives to the fullest.
RGAUK works closely with our Medical Advisory Board who are following the research and work being carried out on Vosoritide. Doctor Melita Irving from Guy’s and St Thomas’ NHS Foundation Trust is a member of the Medical Advisory Board and conducted part of the Phase 2 trials. RGAUK supports Guy’s and St Thomas’ NHS Foundation Trust and the drug trials and are delighted that the trial has, so far, shown a potential to reduce the health complications of people with Achondroplasia.
There has been some discussion around the additional height gained as an outcome of the trial. Whilst this may help individuals when it comes to reaching things more comfortably throughout the day, RGAUK do not view this increased height as an important outcome, and if it is shown that this is the only benefit of Vosoritide and there is no reduction in the health complications, RGAUK would no longer support the development of the drug.
People with dwarfism are often misrepresented in popular media and culture. Yet our own voices are rarely heard. That’s why we embarked upon the RGA Dwarfism Role Models project – to amplify the voices of figureheads in our communities. One person we’ve been admiring for a while is the performance artist and educator, Sofiya Cheyenne, who recently appeared in the Shakespeare Theatre Company’s Richard III. Here’s what she told us.
Please introduce yourself: who are you and where are you from?
My name is Sofiya Cheyenne and I am from Brooklyn, New York.
And what do you do?
I am a performance artist and educator.
Do you enjoy it?
Are you kidding!? I love it! I am so grateful that I have found something that I love and can pursue a career in. Even though I am still growing, learning and developing my own work, it is the best feeling in the world!
How did you end up doing it?
Performing has always been apart of my life. I started dancing at the age of two years old. I went to The Professional Performing Arts High School, majored in Drama Arts. Then went on to graduate from CUNY Brooklyn College with a BFA in Acting & BA in Psychology. And, outside of school, I did dance shows, community theatre, not to mention that my dad is a visual artist, my mother a dancer, and my brother can pick up any instrument and play it. The arts have always been apart of my life.
My passion for educating came from a combination of my performing and life experience.
As a person with dwarfism I am constantly educating others about my lived in experience.
Peoples’ curiosities often become a moment to engage and shift perspective. So, as an actor and an educator, I find comfort in educating others. I started teaching dance classes at a young age, I tutored students in college and now ultimately work as a Teaching Artist in different schools in NYC.
If you were 21 again, would you do something different? NOT ONE THING DIFFERENT.
What’s the best thing about your job?
I’ve found inspiration in other role models, who teach me that being a storyteller is a vital part of the human existence. There is so much power in storytelling; without stories we don’t learn, we don’t grow, we don’t build empathy, we don’t change. We need those things in life and that is the best part of this job. Impacting someone else’s life through a story is what I LIVE FOR! Even though the Entertainment Industry is a tough business, I hope to break barriers and stereotypes to change how the world views people with dwarfism.
What’s the worst job you’ve ever done?
I would have to say that it would be the jobs where it feels like I am the “diversity check box” Its pretty easy to tell when that is the case. Things are changing, but unfortunately its happened to me all too much.
What are the best and worst aspects about being small?
The worst is that we constantly have to deal with the ignorance of the world. The best is that I have an incredible community that lifts me up and they are from all across the globe.
If you could pass on one piece of advice to your teenage self what would that be?
I would say … LOVE YOURSELF. You are exactly who you are supposed to be and you don’t have to pretend to be anything you’re not because you are worth it!
Which living person do you most admire and why?
Oh this is a hard one! I admire so many people for so many different reasons. But the first person that is coming to my mind is my grandmother. My mothers mother, she is a survivor, having her first kid at the age of 17, living in rough neighborhoods raising a family, getting divorced, remarried, became a widow and now battling breast cancer for the second time. She is my hero truly!! And she is such a positive, giving and creative person. She means so much to me.
How do you like to pass the time, outside of work?
I am always working… all the time, everywhere! But I do love to read stories about different people, and history. I love to cook and do DIY projects. I also do a lot of volunteer work for Little People of America as the Chair of Dwarf Artist Coalition.
What’s your favourite book?
Right now I have been digging deep into my roots and learning more about my history and the history of Tainos (Indigenous tribe of the Caribbean). Reading a series called “Taino Ni Rahu” Series written by Lynne Guitar – an archeologist and scholar that I have had the pleasure to know since a young age.
What do you consider to be your greatest achievement?
I think my greatest achievement would have to be my recent credit on Audience Network. I booked my first recurring role ‘Louise’ on a TV show called Loudermilk, which airs on AUDIENCE Network on DirectTV Ch 239 or AT&T WatchTV. It is very exciting because Louise is a strong fierce female character, the role is written for a woman with dwarfism and it is good storytelling over all in the show! I hope to be back for the next season!! *fingers crossed*
When your time comes, how would you like to be remembered?
That I made a positive impact in peoples lives.
People with dwarfism are often misrepresented in popular media and culture. Yet our own voices are rarely heard. That’s why we embarked upon the RGA Dwarfism Role Models project – to amplify the voices of figureheads in our communities. To mark the start of Dwarfism Awareness Month 2018, we spoke with Kiruna Stamell, actress and disability rights activist. Here’s what we learned. Read More
Why is RGA UK protesting these “m*dget wrestling” events?
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We did it! We reached our funding target!
We’re delighted to tell you that – with the help, kindness, and astonishing generosity of hundreds of people – we successfully reached our funding target so we may cover the costs of kids’ places at this year’s Mega Weekend.Read More
For several years now, we’ve been fortunate enough to receive support from Children In Need to subsidize children’s places at our events – allowing them to come for free. Unfortunately, this year our application for Children In Need funding was not successful. Sadly, this will affect the prices we must charge our members to attend our 2018 Mega Weekend.
This year, for the first time ever, we are asking for outside help.Read More
It’s been a little while but we’re back with a fantastic new Role Model in the Dwarfism Community interview! This time, we had the privilege of speaking with Mia Ives-Rublee, a civil rights activist. Check out what she had to say. Read More
People with dwarfism are often misrepresented in media and popular culture. Yet our own voices are rarely heard. That’s why we started our Role Models in the Dwarfism Community series – to showcase figureheads in our own communities. Today, we spoke with Cara Reedy, writer, actor, producer and director.Read More
People with dwarfism are often misrepresented in popular media and culture. Yet our own voices are rarely heard. That’s why we embarked upon the RGA Dwarfism Role Models project – to amplify the voices of figureheads in our communities. For this, our latest instalment, we spoke with Joe Stramondo, Assistant Professor of Philosophy at San Diego State University.Read More