Advocacy Update- Spring 2022
The first months of 2022 kept our team busy! We are happy to share the progress we made for adrenal disease and disability advocacy at the start of 2022.
We hosted the first annual Disability Inclusion Celebration in beautiful Fort Myers, Florida on the Alliance for the Arts campus. This event was to commemorate the launch of the #AllAbilitiesIncluded campaign, a nationwide effort to promote equality, provide support and offer resources to people with all disabilities.
We came together with many other organization affiliates to release the official campaign video below:
The Disability Inclusion Event showcased community resources such as local charities, small businesses, health and wellness services, government programs and featured disabled artists, musicians, authors and crafters in Southwest Florida.
The following booths were represented:
- Bridging The Gap Foundation
- Bumble Bee- Youth in Government Program
- Cape Coral Quilters Guild
- Cypress Pharmacy
- Designed2bFit Wellness Coaching
- Elite DNA Therapy Services
- Fish with a Hero
- Hope Healing Happy Co.
- Lee County Library System
- Lee Health
- Meditative Movements
- Vibe Yoga
- We Rock the Spectrum Kid’s Gym
- YMCA of Southwest Florida
Adrenal Alternative’s founder opened the ceremony with a moving speech entitled, “No Longer Caterpillars.”
“The caterpillar and a person diagnosed with adrenal insufficiency both undergo a process that changes their lives permanently, only to emerge to into a new, different life.
We are no longer caterpillars, we are butterflies.”-Winslow E. Dixon 2022
Click this link to read the full speech or watch the video recording from the live event below.
During the event, guests were invited to bring a blanket or camping chair to enjoy entertainment on the outdoor amphitheater stage with world renowned concert violinist, Kendall Grady and local talent, Doug Mewhorter with additional performances of a crystal bowl meditation session by sound healer, Jenny Hong of Lotus Blossom Clinic and dance routines by the Studio 8 dance team. Participants were also welcomed to attend a Qigong session led by JaySun of Heart of Synergy.
The kids enjoyed a bounce house and slide and playing fun games sponsored by Special Olympics of Florida. They also were able to create their own craft project with A.R Workshop Fort Myers.
The day was an incredible reminder that when a community comes together, positive changes can be made, and you can truly BE the GOOD you want to see in the world.
As soon as our event was over, the very next day we started our advocacy work for Rare Disease Week on Capital Hill.
We met with U.S. Congressman Byron Donalds and discussed our All Ability Inclusion advocacy campaign and also discussed the importance of his vote to support the passing of the STAT ACT.
The STAT Act seeks to enact targeted, impactful, and attainable policy reforms at the Food and Drug Administration (FDA) to accelerate development of therapies across the spectrum of rare diseases and disorders and facilitate patient access to such therapies.
How does the STAT Act impact adrenal disease patients?
Adrenal insufficiency is a condition that renders a person cortisol deficient. In a normal person, during situations of emotional or physical stress their body releases more cortisol. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol.
In an adrenal insufficient person, this does not happen. They must artificially manage their cortisol with pills. Their personal cortisol needs may differ from day to day. No two days are the same and it is a struggle to regulate proper cortisol levels.
Unlike diabetic patients who can check blood glucose levels, adrenal disease patients have no meter to check their cortisol levels. They must be constantly vigilant of their own personal signs and symptoms of low cortisol and require an emergency injection if their levels drop too low.
Without adequate levels of cortisol, the body will go into an adrenal crisis, which will result in death if left untreated. Even when patients survive an adrenal crisis, they can be impacted by lowered quality of life as well. Therefore, it is imperative that the cortisol levels in the body are adequately replaced.
The standard treatment for adrenal insufficiency patients is daily cortisol replacement medication- steroids. Medications such as prednisone, dexamethasone or hydrocortisone are prescribed to replace the deficits of steroid hormone in the body. The most commonly prescribed steroid for adrenal insufficiency is hydrocortisone (HC) pills. This medication has a blood serum half-life of 90 minutes and must be taken multiple times a day.
A large number of adrenal patients struggle with quality of life on the standard protocol. Oral HC must be processed through the stomach and the liver before reaching the blood stream. This can cause a constant rise and fall of cortisol levels, which can result in subpar function and lowered quality of life.
Cortisol replacement advancements such as: time released steroid medications, compounded hydrocortisone and alternative delivery methods such as cortisol MDI (multiple daily injections) and the cortisol pump are not easily accessible. These treatments are legally prescribed, off label options which have documented research as being successful advancements, but due to not yet being FDA approved, most alternative options are not covered by insurance.
The STAT act supports methods that allow the FDA to accelerate and approve such therapies, therefore increasing treatment options for patients suffering from adrenal diseases that result in cortisol deficiency.
The passing of the STAT Act will not only broaden treatment accessibility for adrenal disease patients but also benefit many other rare conditions in need of better treatment options!
This is a step in the right direction for legislative advocacy, because all humans deserve the chance to experience quality of life, and this will open doors for many conditions.
You can find more information on how YOU can help support the STAT Act at this link.
But our work was not done yet! As a part of our #AllAbilitiesIncluded campaign, we have proudly aligned with the Literary Equality Initiative to promote equality and accurate representation for the disabled in literature.
We will be donating copies of our publications below to help raise awareness on adrenal diseases and cortisol care options.
Adrenal Insufficiency 101 Book
Cortisol Pumping Guide Book
We are proudly supporting Disability Book Week!
What is it?
A nationwide project to promote disability inclusion in literature and support disabled authors.
When is it?
The last week in April, annually.
By supporting disability equality in literature we can educate the world on the truth of living life with chronic illnesses and other conditions and empower disabled authors to achieve their goals.
To join the movement, please upload a social media photo with the hashtags-#AllAbilitiesIncluded & #LiteraryEquality
Where to find disability books?
The website- Disabilitybookweek.org has a gallery of books featuring disabled characters and a directory of disabled authors.
How can your library get involved?
Ask your local library to celebrate Disability Book Week with one or all of the following suggestions:
- Feature a display of books with disabled characters and/or books written by disabled authors.
- Host a book reading with a disabled author.
- Social media posts with disability books and/or books by disabled authors.
We are working hard to continue our mission of adrenal awareness and disability advocacy and can’t wait to share more updates on what we are doing.
Sign up for our member email list to get the latest updates at this link.
We appreciate all social media shares and financial contributions which allow us to further our mission, improving access and awareness to all cortisol care options.
To donate safely and securely text the word GIVE to 833-807-5813 or donate through PayPal
Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. All donations are tax deductible. EIN: 83-3629121.