Resources

Angel Flight

 

“Angel MedFlight is the air ambulance industry’s premier air medical transport provider. We know that each patient is unique and we will go to any length to ensure that each transfer is as smooth, comfortable and stress-free as possible. You may contact us at 877-ANGEL70 at any time; we are available 24 hours a day, 7 days a week, 365 days a year”

Contact info for Angel Medflight

Phone: (877) 264-3570 – (877) ANGEL-70

International Dialing: (480) 634-8017

Facsimile: (888) 883-9506

International Facsimile: (480) 247-4603

http://www.angelflight.com/

Email: info@angelmedflight.com

 

Ask Dr. Karen

 

Dr. Karen, Cushing’s survivor and Cushing’s patient advocate answers questions online pertaining to chronic illness, the emotional and psychological impact of chronic illness, coping, and other related issues. Questions can be submitted by e mailing drkarenthames@epictogether.org

Website: http://www.youtube.com/drnkarenthames

 

Battleground Diagnosis

 

“Battleground Diagnosis: The War to Survive Cushing’s Disease/Syndrome”: A Documentary series film about Cushing’s patients and their fight to survive Cushing’s Syndrome. Supplemental educational disc will be included and geared towards increasing awareness in the medical community as well as the general public. CoProducers include Dr. N. Karen Thames and Marc Harris.

Website: http://www.battlegrounddiagnosis.com (under construction)

You can like the documentary page on Facebook: http://www.facebook.com/Hug.A.Cushie

 

Chronically Smiling

 

This website is where visitors can nominate chronically ill patients and their caregivers to receive care packages in the mail during hard times.

 

They have sent over 100 packages!

 

Contact them at www.chronicallysmiling.com

 

Cushing’s Awareness

 

The EPIC Foundation proudly works in alliance with Janine Gilbert, founder of Cushing’s Awareness. Cushing’s Awareness is a site dedicated to promoting the advocacy of Cushing’s patients and increasing awareness of Cushing’s Syndrome. To learn more information about this affiliate, you can go to www.facebook.com/cushingsawareness/

 

Cushing’s Connection Advocacy Program

 

Go to http://www.cushingsconnection.com There you will find an abundance of information along with the option of being paired with a patient advocate who can help you with your journey with Cushing’s Syndrome/Disease. In addition, they offer a free for all symptom tracker to help track your symptoms for optimal symptom management along with an organized way of communicating with your Doctors.

 

http://www.cushingsconnection.com

 

Cushings-Help

 

Cushing’s survivor Mary Kelly O’Connor has dedicated the last two decades of her life giving back in a mighty way! She pioneered community building through social media and was the first advocate to help increase awareness as well as create a space for others to learn more about their illness as well as share with others. She continues to do this tremendous work and offers valuable resources to the community and their loved ones.

 

http://www.cushings-help.com

 

Cushing’s with Moxie

 

Melissa Moxie is a powerful advocate in the Cushing’s community. A survivor of Cushing’s Disease, after multiple surgeries and a long journey, she is a warrior in her own right. Taking her adversity, she has turned it into an opportunity to give back to the community. She is a tremendous resource!

 

“Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity

 

http://cushingsmoxie.blogspot.com/

 

Disabilities-R-Us

 

In the words of Disabilities-R-Us: “Welcome to Disabilities-R-Us, the chat room and community created by and for those of us with physical disabilities (but everyone is welcome). For over 20 years we have been providing a warm and friendly place where you can make new online friends from all over the world.”

 

Website: http://www.disabilities-r-us.com/

E mail: http://disabilities-r-us.com/@DisabilityChat

 

EndPain

 

“EndPain is a unique organization using storytelling and narrative to dismantle paradigms of shame, guilt, and fear.” They share the brave stories of those suffering with invisible chronic illness and illnesses that others do not understand.

 

EndPain is interested in your story submissions so they can be a voice for you!

You can follow this link to read the instructions for how to enter your own personal story for publication: https://www.endpain.com/tell-us-your-story.html

 

The website for EndPain is: https://www.endpain.com/

 

ENDPAIN

2231 South Barrington Avenue

Los Angeles, CA 90064

310-401-6759

 

The EPIC Foundation

 

Empowering People with Invisible Chronic Illness (EPIC) Foundation is a 501C3 nonprofit organization. The EPIC foundation provides support, advocacy, education and tools to people who are affected by chronic illness. This foundation will provide various resources to help people through the process of living with their chronic illnesses. EPIC supports patients and caregivers facing chronic diseases including Cushing’s Disease, Secondary Adrenal Insufficiency, Addison’s/Adrenal Insufficiency, and Growth Hormone Deficiency. The EPIC Foundation’s staff includes Psychologists trained in helping patients and caregivers.

 

The EPIC foundation is unique due to the nature of how we embrace the mind, body, and spirit rather than only the actual disease. The EPIC Foundation intends to address vital issues such as trauma and suicidality which affect the community.

 

www.epictogether.org

 

Global Genes (Allies in Rare Disease)

 

Global Genes provides support to patients with rare diseases. This is their mission in their own words: “To Eliminate the Challenges of Rare Disease.

 

We build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.”

 

Website: https://globalgenes.org/

 

Global Genes

World Headquarters

28 Argonaut, Suite 150

Aliso Viejo, CA 92656

T: 949-248-RARE (7273)

 

Ilana Jacqueline (Blogger)

 

Ilana is an advocate in the chronic illness community and wears a few special hats in the community. She works as the Managing Editor at GlobalGenes.org. She is also the Executive Director of Chronic Connect, Inc. They have a program called Chronically Smiling (www.chronicallysmiling.com) where visitors can nominate chronically ill patients and their caregivers to receive care packages in the mail during hard times. They also offer a few different programs for patients and caregivers involving education, career and financial planning with chronic disease. They, additionally, have a financial aid fund for outstanding medical bills and medical travel expenses.

 

Please find Ilana’s blog at www.letsfeelbetter.com  Look out for her book on “Surviving and Thriving with Chronic Illness”, which is being released by New Harbinger in January 2018!

 

Kathy’s House

 

Kathy’s house is your home away from home when seeking medical care or surgery in the Milwaukee/Brookfield, WI area. Through this program, you and your caregiver can receive free lodging during the time of your treatment. It is sponsored through donations. You are not required to pay a fee during your stay. Guests receive their own spacious bedroom.

 

“Kathy’s House is a non-profit hospital hospitality house designed to accommodate individuals visiting Milwaukee area hospitals for medical treatment as well as their caregivers. To make arrangements to stay at Kathy’s House, you must first have a referral faxed to Kathy’s House by a Health Care Professional familiar with the patient. Kathy’s House does not charge guests to stay. Guests are asked to make a donation to Kathy’s House.”

 

Contact info:

Kathy’s House, Inc.

600 North 103rd Street

Milwaukee, Wisconsin 53226

(414) 453-8290

http://www.kathys-house.org/


Mark Hansel Tax & Accounting LLC

Mark Hansel, CPA, EA

Park Ridge, IL (will travel locally and is licensed to do taxes in every state, long distance)

Phone: (224)725-0098

E mail: info@markhtax.com

Website: http://markhtax.com/

 

Mark is able to help with more complicated tax cases. Are you a chronically ill patient who is having difficulty with your taxes? Have you had student loans or other loans forgiven due to financial hardship but are now faced with paying hundreds or thousands in taxes because of the forgiven debt? Mark has a specialty in this area and can help you.

 

Let him know that Dr. Karen (Chicago) from The EPIC Foundation referred you.

 

NADF (National Adrenal Diseases Foundation)

 

“The National Adrenal Diseases Foundation is a 501(c) (3) non-profit organization dedicated to providing support, information and education to individuals having Addison’s disease as well as other diseases of the adrenal glands.”

 

NADF supports those who have a history of Cushing’s Disease and suffer from Primary or Secondary Adrenal Insufficiency. NADF is committed to bringing information regarding these rare diseases into the public’s awareness to facilitate early diagnosis and treatment. NADF sponsors support groups across the country allowing for an exchange of ideas and feelings by individuals who share a common illness. NADF members receive quarterly newsletters, educational materials, and access to a library of related information.”

http://www.nadf.us

 

NORD (National Organization for Rare Disorders)

 

NORD helps people who are trying to get a diagnosis for Cushing’s. They may help with copays, deductibles, and travel and lodging! If you need help, call them. The direct contact is Melyssa Antonio and she can be reached at 800 999 6673 EXT 240

Pfizer Program

 

If you are using a Pfizer drug including Growth Hormone and Cortef, you may be eligible for copayment assistance or even full coverage of your medications. You can explore these options by visiting http://www.pfizerhelpfulanswers.com Advocacy Programs

 

https://rarediseases.org/

 

Total Disability Discharge

 

Did you know that you can get a total discharge from your student loans?!!!! If you owe student loans, you can have them forgiven if you are on disability and/or you can get your physician to vouch for you. The number to call is 888-303-7818 and website is http://www.disabilitydischarge.com/