We are Butterflies

Below is the transcript for the opening ceremony speech “We are Butterflies” at the 2022 Disability Inclusion Celebration.

Video recording of the opening ceremony speech.

“My name is Winslow. I am the CEO of Adrenal Alternatives Foundation, which is a non profit organization dedicated to cortisol care and disability advocacy.

You are probably wondering why I am wearing a blue butterfly cape. No, I don’t think I’m lady Gaga and I didn’t get today mixed up with Halloween I promise!

The blue butterfly is the symbol that represents adrenal disease, which is a condition I have personally and also the disease that Adrenal Alternatives represents.

But the butterfly represents so much more than just my condition, butterflies share many similarities with all of us, but especially those who battle with disabilities.

Butterflies are a powerful symbol of rebirth and the start of a new beginning. Similarly, a diagnosis of a disability is the beginning of a different life as well.  

Before it’s metamorphosis, the butterfly is a caterpillar.

When the caterpillar spins itself a cocoon, it likely has no idea what is happening. It goes through a time of isolation while its body is changing into something it doesn’t recognize. The caterpillar has no idea it is to become a butterfly.

The caterpillar and the disabled both undergo a process that changes their lives permanently, only to emerge to into a new, different life.

The butterflies time in its cocoon can be likened to many disabled experiences: the medical tests, the hospital trips, and the realization that your body is changing right in front of you and it is out of your control.

Interestingly enough, a butterfly’s diet consists of items which naturally contain sodium such as grass and milkweed. Butterflies have also been known to drink tears of other animals because of the sodium content.

Talk about getting strength from your enemies!

Our tears of pain, loss and grief have only strengthened us to become the powerful forces that we are to handle all the challenges we do every day, just to accomplish what some would deem as “simple tasks.”

That is the incredible irony about being labeled as “disabled.”  Society has conditioned us to believe that disability is defined as someone in a wheelchair or someone who is in a medical facility that cannot fend for themselves. But the truth is, the disabled walk among us, undetected and undefeated. When you see a disabled person accomplish something, you don’t see the strength it took for them to get to that point.

 You don’t see the hours of medical treatment they require, hooked to medical tubing just to sustain their lives. You don’t see the tears they fight back when someone questions the scars, the weight, the deformities that their own bodies fell victim to due to a disease process they cannot stop. You don’t see the effort they make to offer a gracious comeback to someone’s ignorant suggestion as to why they are not “better yet.” You don’t know that it takes everything inside them just to do a simple task such as grocery shop, drive a car or even get out of bed.

The disabled are not victims, they are victors over every obstacle they face, every single day.

The disabled, like the butterfly are a symbol of strength and beauty. And just like the butterfly cannot see the beauty of its own wings, it’s likely you cannot see the beauty that you offer to the world, despite all your challenges.

So today is about celebrating the strengths we’ve found in our weaknesses. 

We are no longer caterpillars, we are butterflies.

I want to encourage you to see the beauty in yourself and accept who you are, flaws and all.

We may be disabled but we are NOT defeated.

-Winslow E. Dixon , CEO Adrenal Alternatives Foundation

This speech was performed at the Disability Inclusion Celebration 2022, which is a community outreach event sponsored by Adrenal Alternatives Foundation to promote disability advocacy and adrenal awareness.

We appreciate all 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.

Donate to Adrenal Alternatives Foundation

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STAT Act Beneficial for Adrenal Disease

STAT Act Beneficial for Adrenal Disease

The STAT Act (Speeding Therapy Access Today) was created to promote the development of treatment options for rare disease patients and to improve access to medications, protocols and methods to improve disease outcomes.

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.

How to support this bill

Our team was actively involved in Rare Disease Week on Capitol Hill 2022. We met with U.S. Congressman Byron Donalds and discussed our most recent advocacy campaign, Disabled NOT Defeated [Since updated to #AllAbililtyInclusion campaign ]

We also discussed the importance of his vote to support the passing of the STAT ACT.

Please take a minute to ask your members of Congress to co-sponsor the STAT Act today!

Place phone calls to your members of Congress in addition to sending emails.

You can find their contact information and a sample phone script here. https://everylifefoundation.org/stat-act/take-action/contact-your-member-of-congress/?vvsrc=%2fcampaigns%2f81582%2frespond&eType=EmailBlastContent&eId=d37f0b3d-c4ad-44c3-9fe0-3e7774a6a203

Adrenal Alternatives Foundation is grateful to EveryLife Foundation for the incredible advocacy work they do and encourage you to contact your representatives and ask them to support the passing of the STAT act!

Adrenal Alternatives is a proud member of Everylife’s community congress and represents adrenal disease in the United States Rare Disease Congressional Caucus.

Sign up for our member email list to get the latest updates.

We appreciate all contributions which allow us to further our mission, promoting disability advocacy and adrenal awareness. To donate safely and securely text the word GIVE to 833-807-5813.

Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. EIN: 83-3629121.

Advocacy Update- Fall 2021

To save the life of a cortisol deficient person in the event of an adrenal crisis, an emergency cortisol injection must be administered. But unfortunately most EMS personal in the United States are not only unware of this, but are not legally allowed to administer patient medication and most ambulances do not carry emergency cortisol injections onboard.

Adrenal Alternatives Foundation is actively working to change this on a federal, state and local level! We recently visited the campus of EMC Medical Training – Emergency Medical Consultants to provide materials and education on how to recognize and treat an adrenal crisis. This school not only trains EMS personnel but also offers CPR, First Aid, IV Therapy, Phlebotomy, EKG and Emergency Airway Management to all medical professionals.

Our goal in providing this school with copies of Adrenal Insufficiency 101 , EMS protocols for cortisol deficient conditions and pamphlets on how to manage an adrenal crisis is to prepare medical professionals who attend their classes to be able to recognize an adrenal crisis and know how to administer an emergency injection.

Photo of EMC Instructor Lauren and AAF team member, Winslow E. Dixon

You can get involved too! Call or visit your local fire house and EMS station and advocate that they add adrenal crisis protocols. You can download full instructions on How to add Adrenal Crisis Protocols to your city’s EMS program from our website.

We appreciate all contributions which allow us to further our mission, improving access and awareness to all cortisol care options.

Donate to Adrenal Alternatives Foundation

Sign up for our member email list to get the latest updates.

Advocacy Update- No Patient Left Alone Expansion Proposal

Adrenal Advocacy Update

Adrenal Alternatives Foundation and CHronic illness advocacy & awareness Group (Ciaag) have joined together to address the serious issues COVID-19 restrictions are having on millions of citizens with rare diseases and/or chronic illnesses. Patients with continuous ongoing treatments such as dialysis, chemotherapy and IV infusion medications, now forced to be alone during these already difficult treatment sessions. This increases their suffering and has potential mental health implications, which then can adversely impact their overall health and wellbeing. 

There are great concerns regarding the increased potential for patient endangerment and medical errors in patients with rare disease protocols without caregivers and advocates present. Facilities, hospitals and treatment centers are citing COVID-19 as the rationalization behind restricting visitor access are not complying with the requirements of the Americans with Disabilities Act (ADA) which clearly states in Titles II and III that health care facilities are mandated to provide reasonable accommodations for persons with disabilities. 

These accommodations can include visitors who provide the patient with necessary support services, including communications, behavior/emotional support, and support managing the patients medications and other unique needs. There are several federal disability civil rights laws that apply to hospitals including, but not limited to, Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section 1557 of the Patient Protection and Affordable Care Act (ACA). All of these statutes protect people with disabilities yet facilities, medical centers and hospitals across the nation are denying chronically ill patients a basic human rights of support and comfort of a loved one during medical experiences, citing COVID-19 restrictions as the reasoning. The ADA, RA, and ACA laws are still enforceable during the the COVID-19 pandemic.

The United States Department of Health and Human Services’ Office for Civil Rights issued a statement specifically reminding hospitals that they must “keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of disability” and that the federal disability rights laws “remain in effect” even during the COVID-19 pandemic.

Our Proposed Solution: Standard legislation that mandates medical centers must follow existing guidelines in Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section1557 of the Patient Protection and Affordable Care Act (ACA). There needs to be legislation that allows chronically ill patients to have a caregiver with them during medical procedures, treatments and surgeries even during a pandemic. 

Bill Proposal: Expanding the SB 730 – No Patient Left Alone Act BILL ANALYSIS: S730 contains the “No Patient Left Alone Act” which ensures the visitation rights of hospital patients during a period in which a disaster, emergency, or public health emergency has been declared.

GOAL: Proposing expansion on the No Patient Left Alone Act, originally passed in North Carolina. We are proposing a standard protocol outlined in a legislative bill that will mandate nationwide protocols that allow chronically ill patients to have a caregiver with them during medical procedures/treatments. 

If you would like to support our efforts please sign: Petition to Expand the SB 730:The No Patient Left Alone Act

If have been denied these rights: Print the DISABLED COVID RIGHTS PDF and provide it to the medical facility who has denied you.   

Remember, It’s Important to Know Your Rights!

SIGN THE PETITION, CLICK THE LINK HERE

Further reading can be found at the links below:

Covid Rights Initiative- Adrenal Alternatives Foundation

Hospitals Must comply with ADA rights

Supporting Family Caregivers in Providing Care

Supporting Family Caregivers in the Time of COVID-19 – State Strategies 

Hospitalized Adults need their caregivers – they aren’t visitors 

Caregivers are missing from the Conversation

SB 730 – No Patient Left Alone Act

This information has been brought to you by the Adrenal Alternatives Foundation and is not to be used to provide medical care or legal advice.

We appreciate all shares, contributions and donations which allow us to continue our mission, advocacy and access for all cortisol care.

Adrenal Advocacy Update – Summer 2021

Adrenal Advocacy Update: Summer 2021

Adrenal Alternatives Foundation is proudly representing cortisol deficiency in the rare disease congressional caucus. We are also proud to be a part of Rare Disease Week on Capitol Hill.

During Rare Disease week on capitol hill 2021: We are voicing our support of the following legislation:

The STAT Act

The Safe Step Act

The Benefit Act

we are also asking for attendance, endorsement and support FRom congressional represenatives foR OuR Upcoming disability inclusion event.

You can get involved too!

Contact your local representatives and ask them to co-sponsor the STAT Act, Benefit Act and the Safe Step Act to benefit all rare disease patients!

You can also invite them to attend the Disability Inclusion Event!

This information was brought to you by the Adrenal Alternatives Foundation for educational use only and is not meant to provide medical care or legal advice.

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