❓Guest Question: Legal Assistance for Cushing’s Patients

 

If you can help, please respond here or on the Message Boards.  Thanks!

I believe I need legal assistance related to i humane treatment by city and/or county officials. I can explain further, if need be, once I find out if it’s even possible to get help. And I certainly cannot afford to pay an attorney, since my income is SSD (Disability), which is low and fixed, which has been the case since Cushing’s reared it’s remorseless, destructive head in 2008. Is there any legal assistance fund set up for Cushing’s patients?

 

❣️The Message Boards Turn 19 Today! ❣️

 

 

Today  is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year on July 21, 2000)

As of today, we have 72,796 members who have made countless posts.

Find the message boards here: http://cushings.invisionzone.com/

 

💉 Helpful Doctors: Oregon

Louise shared her helpful doctor, Maria Fleseriu, in her bio.

 

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Maria Fleseriu
Your Doctor’s Address Street Address: 3303 SW Bond Ave
City: Portland
State / Province: Or
Postal / Zip Code: 97239
Your Doctor’s Phone Number (541) 494-4314
What are your Doctor’s Specialties? Neuro-endocrinology
What are your Doctor’s Hospital Affiliations? OHSU

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❣️Happy 19th Birthday Cushing’s Help!

It’s unbelievable but the idea for Cushing’s Help and Support arrived 19 years ago late last night. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

Thanks to a now-defunct Microsoft program called FrontPage, the first one-page “website” (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000.

All our Cushing’s-related sites:

 

❣️We’re nearly 19!

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 19 years ago tonight.  That’s a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!

The message boards are still active and we have a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

 

maryo colorful zebra

⁉️ What’s on *Your* Medical ID?

You do have one, right???

I loved the one that Natalie had and, after her death, I bought the same style as a way to honor her memory.

There’s room for 5 lines on there – not enough for everything but enough to get me through an emergency…and I have had some.

 

 

There’s also a line with my info number so when the EMTs call the tollfree number, they can get right to my complete info.

So – what do you have on yours?  Please share!

😷 Clinical Trial: Endogenous Cushing’s Syndrome Patients Sought for Phase 3 Trial Testing Relacorilant

Corcept Therapeutics is recruiting participants for its Phase 3 clinical trial evaluating relacorilant as a potential treatment for Cushing’s syndrome-related side effects such as high blood pressure and impaired glucose tolerance.

Also, findings from the study “A Randomized-Withdrawal, Placebo-Controlled, Phase 3 Study to Assess the Efficacy and Safety of Selective Glucocorticoid Receptor Antagonist, Relacorilant, in Patients with Cushing Syndrome (GRACE Study),” were presented at the 2019 Annual Meeting of the Endocrine Society (ENDO), in New Orleans, Louisiana.

In endogenous Cushing’s syndrome there is an “internal” culprit — usually a benign tumor — that makes the body produce too much of the hormone cortisol. The excessive amount of circulating cortisol can lead to serious problems, such as type 2 diabetes and high blood pressure.

Relacorilant is designed to prevent the effects of excess cortisol by blocking one of its receptors, the glucocorticoid receptor. Results from a Phase 2 trial (NCT02804750) suggest that relacorilant may manage the effects of prolonged cortisol excess in Cushing’s patients faster and without the known side effects of approved medications like Korlym (mifepristone).

Also, the treatment improved glucose tolerance and improved blood pressure in patients, suggesting it could be used to treat those with endogenous Cushing’s syndrome and concurrent type 2 diabetes mellitus, impaired glucose tolerance, and/or uncontrolled high blood pressure (hypertension).

Corcept has now designed the GRACE Phase 3 trial (NCT03697109), a multicenter, double-blind, placebo-controlled, randomized-withdrawal study, to evaluate relacorilant’s safety and effectiveness in these patients.

GRACE will be conducted in two stages. First, all patients will be given oral relacorilant each day for 22 weeks, at doses rising from 100 mg to a maximum of 400 mg.

Those who complete that stage and show improvements in pre-specified parameters of glucose tolerance or hypertension will move into the second, randomized phase of the trial.

Here, they will be randomly assigned to placebo or relacorilant at the same dose they received at the end of the first stage. This new round of treatment will last 12 weeks. Treatment-related adverse events (side effects) also will be assessed for up to 48 weeks (about 11 months) as a main outcome.

Additional primary goals include changes in glucose tolerance and blood pressure between the end of the first and second stages of the study.

Secondary objectives include identifying the proportion of patients achieving a response in glucose tolerance and high blood pressure criteria and the proportion of those who worsened at the end of the first stage, and the changes in quality of life throughout the study.

Researchers plan to enroll 130 people in these U.S. cities: Indianapolis, Indiana; Metairie, Louisiana; Jackson, Mississippi; Albany, New York; Jamaica, New York; Wilmington, North Carolina; Miami, Florida; Summerville, South Carolina; El Paso, Texas; Oklahoma City, Oklahoma, and; Aurora, Colorado. More detailed information is available here.

“We look forward to presenting new findings concerning cortisol modulation in patients with hypercortisolism,” Joseph K. Belanoff, MD, Corcept’s CEO,  said in a press release.