Chronically Awesome: A Proud Rare Disease Day Partner
“With research, the possibilities are limitless”
Today is #RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases!
With the theme of research, and the slogan, ‘With research, the possibilities are limitless’, #RareDiseaseDay 2017 is an opportunity to call on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community. Read More…
Laguna Niguel Proclaims February 28, 2017 “Rare Disease Day” In The City
On February 21st, 2017, The City of Laguna Niguel ** presented The Chronically Awesome Foundation a proclamation declaring February 28, 2017, Rare Disease Day in the city. It was an honor to receive the proclamation on behalf of the one in 10 residents of our city, our state, and our nation who live with a rare disease.
We thank The Laguna Niguel City Council and the amazing residents of the city for their kindness and generosity to all members of the chronically ill community and we look forward to working with the city in the future.
NORD Issues Statement on President Trump’s Address to Congress – Washington, D.C., March 1, 2017 –
he National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to President Trump’s first speech to Congress: Read More…
When we receive letters from the parents of children with chronic and often rare diseases, the first thing these parents will tell us is about the strength and courage their children have. Jules daughter had a child with a rare disorder and has often asked how we, as adults, could develop the courage and strength of these children when we face our own chronic (and sometimes rare) diseases? Jules says that while she was somehow able to set aside her own symptoms at that time she was never able to set aside her fear. A child can go to bed with hope that the tumor or the pain or the illness might get better tomorrow while we go to bed thinking over and over, “tumor tumor tumor tumor” until the tears send us into a terrible sleep.
Maybe if we took a moment to learn the story of Emi and her bravery we would understand true courage and strength and from this wee bit of a girl, we might take just one ray of her sunshine to warm us when we are feeling the coldness of chronic illness. One ray of her light would make the whole of one of any of us, the whole of YOU, Chronically Awesome.
Chronically Awesome first heard about Emi from her mother, Rachel. This is what Rachel had to say in her email to us:
(Emi)…suffers from intestinal contractions and has pain every day. We have never been given a diagnosis and Drs and specialist have told us they have never seen these types of issues. At one time they told us this was just her life she will be in pain, there was nothing they could do. She has several ailments that contribute to her health she has a colostomy bag because of an impaction she had in April. She has had 8 surgeries 3 last yr alone, and we still do not know after 3 years what is causing this We have been to hospitals in Dallas-Fort Worth Lubbock midland and Odessa TX
We are now being referred to Ohio
At this point, we are desperate and reaching out trying to find someone with similar experiences or a doctor that can help us.” – Rachel
“…this was just her life she will be in pain, there was nothing they could do.” That is what the doctors told her.
If you are reading this, and you are a parent, is this what you would stand still for? Yeah, we didn’t think so.
Emi’s story had to be told, and to tell her story the best place to go was the meeting place of the masses: Facebook. If you visit Emi’s Facebook page today there is a quote on the header, it says “Everything is Figureoutable”.
Read More About Emi…
When Richard was diagnosed with pleural mesothelioma in 2012, he was given a grim prognosis of just one year.
Despite the bad news, he wasn’t about to surrender what he loves most: Giving back to the community.
“[Mesothelioma] forced me to quit work and retire earlier than I wanted to, but it opened other opportunities,” he said. “I found the silver lining in it.”
Now, Richard spends his days serving others by working on the White County School Board, where he can impact the lives of many. “My forced retirement gave me this opportunity,” he said. “I don’t always feel well, but I still have the energy, drive and the time to do it.”
Every decision Richard makes has one goal in mind: To make a difference for others. For more than two years, he and his wife journey to Nashville or a clinical trial using targeted therapy to treat mesothelioma. Clinical trials are the future of mesothelioma treatment.
“It was an opportunity to contribute. I’m not a doctor, and I’ll never be one, but I can be a good patient for them,” Richard said. “Maybe they can learn something from me.”
Jules’ Rare Disease Day Story:
Finding Equilibrium: My Rare Disease Day Story
Any of us who have lived with a rare condition for several years have had many chapters in their journey. As my life with a rare disease has progressed, my story has changed many times. Finally, my rare disease story has brought me here, to a time where I am finding equilibrium.
Like many of us, I have learned to adapt. That is how we all live, not just those with a rare disease or a chronic illness. None of us stay the same. When I think of my life with a rare disease, when I think of my rare disease story, I think of my story as a book. Each section of my book has chapters that tell the story of that time in my rare disease.
Now is the time in my rare disease journey where I work on Medical Maintenance, Mental Maintenance, Lifestyle, and Relationships. This is where I have found a way to build a life intertwined with my rare disease instead of making my life about my rare disease. Read More
Want To Have Some Fun? Here Is A Rare Disease Day Word Search!
A disorder is considered rare when fewer than 200,000 people in the United States has the condition. Some of us with rare disorders go to the emergency room when something goes wrong, it is after office hours and we do not have a choice, but when we get there the doctor looks at us with a blank stare. Suddenly we feel like we must be one of a kind. Here at Chronically Awesome, we have heard of patients with rare disorders watch doctors grab manuals or google the disorder.
A doctor won’t find Preston’s condition in the Merck Manual or on WebMD. In fact, if anyone wants to learn about Preston they must find the research paper written about the condition that only he has. Preston has
Preston has Unique Interstitial Deletion of Chromosome 15q21.3q22.31 and at t;(1:15)Translocation. Read More
By Donna Kay Merrick
How do you give Rare Disease Day the credit it deserves? Did you know that you can change the way people react to you and your past life experiences using just 3 simple digits? Read More
February 28, 2017, is the 10th Rare Disease Day
An International Event
Rare Disease Day is the day that patients and their families & caregivers, as well as patient advocate organizations, politicians, medical professionals, researchers, and related industries, come together to raise awareness of rare diseases through thousands of events all over the world.
Since it’s European founding by Eurordis, Rare Disease Day has reached the goal of becoming an international event. 37 countries (creating 39 national alliances), has achieved the astounding feat of having at least one event per continent. National Alliances ensure the coordination of Rare Disease Day at each county’s national level. Rare Disease Day events vary from galas, backyard parties, and the collecting of patient stories. Each event created with the goal to raise more funds and increase research on rare diseases.
Here in the US, The National Organization for Rare Disorders helps local groups and organizations sponsor national events. The Chronically Awesome Foundation will also be sponsoring a national event.
“The number of participating countries has increased year-on-year, with thousands of events taking place on all continents for Rare Disease Day 2016. In total, events have taken place in over 100 countries since 2008. Previous years have played witness to events such as Rare Disease Day barbecues on beaches in Australia, to scientific symposiums in Bahrain.
On Rare Disease Day in 2013 the number of tweets that were talking about rare diseases reached 17 per minute, and in 2015 the Rare Disease Day official Rare Disease Day official video was viewed by 1.5 million people on Facebook alone.”
Chronically Awesome and Rare Disease Day
As a Partner with NORD, The National Organization for Rare Disorders, The Chronically Awesome Foundation is collecting your Rare Disease stories.
The Chronically Awesome Foundation has created an event that, in concert with our mission of creative expression, allows you to join patients around the world who advocate for research by sharing your story. The powerful stories of the rare disease patient is already a powerful tool that has helped to steer research toward rare diseases. We want the Chronically Awesome Community to be a part of that power, we want you to be a part of that power.
Patients have and will continue to make a difference.
We want your stories, we want your creative work. The power of your words will create possibilities and possibilities are limitless!
Between now and February 27th, The Chronically Awesome Foundation is accepting creative submissions that represent your “Rare Disease Story”. This event will be published on the NORD event calendar for Rare Disease Day, your story will be read or seen or heard. You will make a difference, the possibilities are limitless!
We will accept:
- Short Stories
- Videos (Embed links to YouTube)
- Photographs or Collages
- Images of creative work: paintings, sculpture, etc.
- Music (email to discuss submission)
Email your work to firstname.lastname@example.org*
We look forward to reading and publishing your “Rare Disease Story” on February 28th. Sharing your story with the entire Chronically Awesome Community as well as lawmakers, policy makers, research and industry stakeholders will begin on Rare Disease Day and continue beyond that date.
While we celebrate the efforts of patients on Rare Disease Day and shine a light on the illnesses that are often in the dark, the work does not end on March 1st. The efforts of NORD, Eurodis, and all of the Rare Disease Day partners will continue.
Want to join hands with other Rare Disease patients? Submit your photo and Raise And Join Hands HERE!
*Your stories are real, rare, and your own and will not be edited. We cannot, however, accept work that is deemed
“pornographic”. (Each work will be judged on an individual basis, nudity is not excluded but will have to be approved.)
**Look for an updated Laguna Niguel video soon that will include The Chronically Awesome Foundation as a part of the special community organizations