Do you have NASH, F3 or F4, and have ... - Living with Fatty...

Living with Fatty Liver and NASH

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Do you have NASH, F3 or F4, and have an interest in helping educate others about this disease?

nash2 profile image
nash2Partner
15 Replies

There is growing interest in educating people about the risks of liver disease and I've been asked to help find a few people willing to participate in an effort to make educational materials for people who are at risk but do not know that they have the disease. Part of the efforts to reach people before they are ill. If participating might be of interest let me know. If you want to do it privately email me at screening@fattyliverfoundation.org.

This is not a project of the foundation but we support these kinds of outreach efforts.

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nash2 profile image
nash2
Partner
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15 Replies
utep99 profile image
utep99

Will be creating after Nov 6 a video that will go out on Facebook about cirrohsis and the thoughts on being terminal and new advances on cures.

nash2 profile image
nash2Partner in reply to utep99

That's cool, might you be interested in being part of a bigger outreach program? They might put some money behind your video, and I'm pretty sure they will pay for your time if you meet their qualifications as

utep99 profile image
utep99 in reply to nash2

Would like to get word out to as many as possible.

nash2 profile image
nash2Partner in reply to utep99

would you like to contact the organizers of the project? They are looking for people willing to tell their patient story as part of an outreach effort to teach people about the disease.

utep99 profile image
utep99 in reply to nash2

I would love to get with these guys. Have added a ALF donate button to my web sites and would like to tell my story and warnings so that no one else hits this brick wall in their lives. A chance to save a life is a high honor.

nash2 profile image
nash2Partner in reply to utep99

OK, the next step is up to you, this is their instruction to me.

In respect of the patients’ privacy, the process our team follows is to have the patient contact us to start the conversations for the Patient Ambassador Program. Can you provide any interested patients, with our number (1-877-403-4579) or email (Linda@mypatientstory.com) to contact us directly to officially kick off these conversations?

The money behind this is Gilead, one of the biggest drug companies. They are serious about patient outreach so don't be concerned that it could be some kind of scam or shady deal. I've been working with them for a couple of years now and I can't find anything negative in the way they have treated me. They are also likely to be the first to have some kind of treatment for cirrhosis. Remember they have the Hep C cure that has saved many lives. If helping other patients is appealing you should contact them.

Wayne

TLC777 profile image
TLC777 in reply to nash2

Is this still open for ?

nash2 profile image
nash2Partner in reply to TLC777

Hi TLC, no that project has been filled up

Kitkatnash profile image
Kitkatnash

I would love to speak . i live in wisconsin but would travel with cost support. I have been a child safety supervisor and trained staff. I enjoyed that. I also lost that career with short term memory losses and word retreavel. If i spoke about NASH iwould include those issues by telling my audience to watch for it as an awareness tool. Let me know as currently on disability with veteran status

nash2 profile image
nash2Partner in reply to Kitkatnash

I don't know if they have filled their program but feel free to contact them here.

Patient Ambassador Program. Can you provide any interested patients, with our number (1-877-403-4579) or email (Linda@mypatientstory.com) to contact us directly to officially kick off these conversations?

asurfpro profile image
asurfpro

I will help.

Harrison

nash2 profile image
nash2Partner in reply to asurfpro

They may have filled the program, but here is the contact info

Patient Ambassador Program. Can you provide any interested patients, with our number (1-877-403-4579) or email (Linda@mypatientstory.com) to contact us directly to officially kick off these conversations?

Pamela0419 profile image
Pamela0419

I am awaiting the official call from the Dr, but it looks like NASH will be among several liver injuries per the biopsy and consult reports posted to my patient portal.. Stage 3Fibrosis. Also auto-immune overlap, and the ballooning steatohepatcytes(?) I believe are typical of advanced NASH. Not sure where to start, but I would certainly like to learn from and share my experiences with others. If I can be of help please advise me. Thanks

nash2 profile image
nash2Partner

Hi Pamela, Madrigal is wanting to talk with a few patients about their journey. Most of the volunteers are long time veterans. As a new diagnosis they might find that of interest. If you would be willing to speak with them send me your contact info in chat and I'll connect you.

Alterity profile image
Alterity

Not sure why this showed up after 5 years, but if you ever need anyone to speak about NASH, I would be more than happy. I have been in stage 4 since diagnosed in 2001. I weighed 285 then and 198 now, still wanting to lose more, but as we know that is so hard. I would be happy to do public speaking. I was supposed to speak at Ohio State University at their NASH day, because my doctor says I'm her longest living patient, but she didn't get the event put together. I will be retiring in 2024 at the age of 68, so I will have more time on my hands, everyone tells me I look like I'm 54, I don't think that came from my liver, it came from doing things right and not abusing my liver.

Thank you

Pam Miller

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