📅 Invitation to Patient Day 2018

Please join us for Patient Day 2018 at Ultragenyx in Novato, CA on Saturday, April 7, 2018, for a day of live music, food, games, refreshments, and much more!
A limited number of travel scholarships will be available for patients and loved ones that may be joining them to support their participation in Patient Day 2018. For event details, travel scholarship information and to register, please click here.
An email confirmation will be sent to you upon completion of your registration. Travel scholarship awards will be sent out after February 1, 2018, once a decision is made.
We welcome all families living with any rare disease to join us in celebrating their strength and courage, while also recognizing their daily challenges and sacrifices. The interactions between our employees and families provide a first-hand education about living with rare disease and further inspires the work we do for patients and families. We would like to honor and thank all of the patients who are participating in our clinical trials; however, we also have to follow federal regulations regarding the avoidance of influencing patients in our studies. So sadly, we cannot have patients who are currently participating in selected Ultragenyx or Audentes studies attend Patient Day 2018.
If you are a healthcare provider caring for people with rare diseases, please feel free to forward this invitation to your relevant patients.
Please contact us if you have any questions or are unable to access the registration site.
Hope to see you there!
Patient Day Registration Team

✍️ Sign Up and Enjoy Patient Benefits

 

Sign Up and Enjoy Patient Benefits

To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards.

Please be aware that each entry is checked individually. Please include your correct personal phone number as we will call you to verify your information.  It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information.

At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories!

Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey.

Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year.

We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years!

Register here!

 

⁉ What Do *You* Think?

This question was originally posted on Facebook.

 

I responded with a quote from this book: Harvey Cushing: A Life in Surgery

“Dr. Harvey Cushing, who is the one responsible for discovering our disease, found some of his patients in circuses.”

Other responses so far:

OP:  Thank you for sharing this Mary Kelly O’Connor… as sad as this is… that our past cushing’s friends were on display as freaks in circuses, i am happy he was able to find them and help them and further his research.

Mary Kelly O’Connor: I remembered from reading this book many years ago.

For a long time, I was “mad” at circuses until I realized that they were the only people offering jobs to Cushies and others who should have had a better chance at life.

I know the circuses were exploiting the “freaks” but at least they could find a place in society.

I am so thankful to Dr. Cushing and the work he did…for all of us. I hate the disease but I am so glad that I’m alive after it was discovered and I didn’t have to run away to join a circus, too.

OP: Mary Kelly O’Connor i also am thankful to dr harvey cushing… even though i did read he was sorta an asshole arrogant jerk. Lol. I guess when you are the father of neuroscience you are entitled though…

Mary Kelly O’Connor:  My first “real” endo, the one who diagnosed me was that description. But he got me into NIH for surgery and I’m thankful to him, too. (But I never went back after I found another endo. LOL)

 

 

📅 The EPIC Foundation First Annual Convention

“Thriving With (            )… A convention empowering those with Cushing’s Syndrome and other Chronic Illnesses”

August 8th-August 11th, 2019

The EPIC Foundation proudly announces our upcoming first annual convention!

Get ready to come and meet other chronic illness warriors, get support, and take classes that will help you learn how to THRIVE with chronic illness!

Come out and meet our Keynote Speaker, Teresa Tapp, Founder and Creator of the T-Tapp workout, a rehabilitative workout that is no impact but produces real results! Teresa Tapp cares deeply for the chronic illness community and changes lives every day!

Our first annual convention is taking place in Chicago, IL near O’Hare Airport:

Hilton Rosemont Chicago O’Hare           

5550 North River Road

Rosemont, IL 60018

847-928-6922 

www.rosemont.hilton.com

Thursday August 8th- Sunday August 11th, 2019  

              

Thursday-  Check into hotel plus Meet and Greet reception at 6 PM

Friday and Saturday- Seminars & and Keynote speaker, Teresa Tapp

Sunday-Meet the Executive Board, Staff, and Volunteers from EPIC

Also enjoy some complimentary meals including a dinner with a fashion show!

Start planning NOW!!!! See you there!!!

Many of the speakers are from within the community, as we value your strengths!

MaryO will be one of the speakers 🙂

📞 Webinar: Delays in Diagnosis of Pituitary Tumors: Why They Happen and Steps to Prevent Them

Presented by

Kenneth M. De Los Reyes MD, MSc
Assistant Professor
Co-director of Skull Base Surgery
Director of Quality Assurance
Department of Neurosurgery
Loma Linda University Medical Center

Register Now!

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: Wednesday, December 13, 2017
Time: 10:00 AM – 11:00 AM Pacific Standard Time 1:00 PM – 2:00 PM Eastern Standard Time

Webinar Description

Learning Objectives:

Building Patient and Medical Provider Awareness

  1. To build awareness among patients and medical providers of early signs and symptoms of pituitary and pituitary related tumors
  2. To understand the consequences of delays in diagnosis of pituitary tumors
  3. To outline steps for patients and medical providers to take to prevent delays in diagnosis of pituitary tumors.

⁉️ Can You Help? Adderall and Cushings

Recently posted on the message boards at http://cushings.invisionzone.com/topic/54332-adderall-and-cushings/

I was recently diagnosed by the NIH with Cushings and Adrenal hyperplasia due to a tumor in my adrenals.  I have taken Adderall for a few years now for what I thought was ADD.  Can Adderall increase cortisol levels since it is a stimulant?

If you will respond here or in the comments, I will post your answer to the boards.

😎 Letter to Cushies

Originally posted on Facebook​​​​​​​

To all my Cushie friends who are still dealing with this horrible disease, keep fighting, don’t ever give up, you will get better.  I told a very close friend of mine the other day, if I had the power I would heal everyone you today.  Cushing’s is a horrible disease, and unless you have been through it there is no way anyone could ever understand it.

After a year and a half  since my BLA and I am the healthiest, happiest person I have been in a very long time.  I am working out with a personal trainer once a week because I am determined to regain the strength I lost due to having Cushing’s for six very long years.   I have a long way to go and it is not going to happen overnight but it will happen.

I live each day to the absolute fullest and enjoy every minute of every day, I am so grateful to have made it through to the other side, not without some emotional and physical scars, but I made it none the less.

I think about and pray for all of you every day because without your knowledge and support I don’t know that I would have made it.

To those of you who are still on the boards please feel free to share this post and my story to everyone there.  I am sorry I don’t go on the boards any more, but as I said I didn’t make through without some emotional scars.

I love you all, god bless and be good to yourself always.