Passed The Year & A Half Mark

It’s been awhile since my last update.  In April, I had a procedure that kept me overnight & was my first surgery after transplant.  I have one more procedure after Labor Day, hoping this is the last of it for a good stretch.  This is the flare up of my TSC which usually acts up after the LAM settles down.

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Draft of FDA Testimony

Representing the TS Alliance & The LAM Foundation both when it counts in research & behind the scenes has been something I have championed for a very long time as my health has allowed.

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(Archived) Webinar: Screening & Management of LAM in TSC: What’s New & What’s Needed

On August 11th, the American Thoracic Society (ATS) & the TS Alliance co-hosted this webinar.

I wasn’t able to join that day but I did skim through this & found it to be a good basic primer for people who know a little bit about both diseases but want to learn more.  Continue reading

Potentially Imporant Finding in LAM/TSC Research

I woke up to a pleasant surprise this morning.  I have to thank my tweetchat & Twitter friend, Joe Babaian, for passing along this lead.

This release is very preliminary. That said, I found it interesting as I have always felt (as have others) that it wasn’t just the MTOR pathway alone that was at work in both of my diseases (LAM & TSC).  This seems to confirm that theory.

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Access to Transplant Drugs Potentially Blocked

Healthcare issues aren’t nationalistic.  When one country faces issues with accessing vital medicine or another important issue, others surely may follow suit.

Occasionally, I’ll take on international issues if they are relevant to our community because it could affect my fellow LAM sisters, TSC advocates, & other transplantees I know globally.

Today is one of those days…

LAM Action & Tuberous Sclerosis Association friends, please take heed for future reference for those you serve who may have had transplants or may need them in the future. Even though it primarily affects renal transplantation & drugs now, it sets a dangerous precedent for similar problems with other organs.

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Lung Transplant Week: American Thoracic Society (ATS) & Lung Transplant Foundation (LTF)

I’ve spoken to the American Thoracic Society (ATS) before, worked with them professionally through Medscape, & on some other nonprofit projects.  I love this organization for several reasons.  One of them being that they circulate so much good information on so many different diseases.

The Lung Transplant Foundation (LTF) Foundation also puts great & accurate information out on their social media outlets.  That’s how I came to find out about them.

I’m glad both organizations put together this joint effort for this week to raise awareness about lung transplants.

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Crowdfunding Research: A New NonProfit Funding Vehicle?

I waited to comment on this campaign until after it was over.  I didn’t want it to color or cloud the novelty & I also wanted an honest evaluation of meeting the outlined expectations & goals.  The TS Alliance works very hard on creating new & innovative ways to fund research. I will always appreciate & champion that.   That said, I do think this is worthy of a larger discussion because certainly other organizations will see this & try & copy or put their own spin on it; which could raise some potential red flags. I’m not “picking on” the organization with these thoughts.  I’m playing devil’s advocate because I know other organizations are certain to see this. They’ll also want to try to replicate it for themselves (like any new idea). They may already be doing that & I’m just not aware of it.

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800 Pound Gorillas Starving When They Need Feeding

Thinking outside of common subjects that my rare disease communities are hesitant to discuss (for fear of coming across as morbid or negative), I was thinking of innovations we should be celebrating, but are hesitant to because they may run afoul of our friends & family’s personal ethics & would cause several heated personal & social media discussions over the ethics involved.

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Social Security is NOT Just For “Old People”

Sometimes, when an important issue arises, I have to call attention to it. As I inch closer & closer to possibly needing Social Security Disability benefits I get concerned not only over the process & fight I will need to get it, but if it will even be there when I need it? How many of us in the younger generation, (unless we have parents reaching retirement age) really know about Social Security & what it does?  How many of us recognize the urgency & diligence we need to possess to keep it going?  (Let me be clear, this is not a political soapbox posting. This is a bipartisan mess that needs to be sorted out.)

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