EVLYNN: “Who ever is last will be last.”


Today’s a sad day for me.  Interesting that this flowed into my email today.  I always wondered what rare blood disease that took her from us.  Hopefully, someday someone else will not have to go through it. 

“My love, were it in my power, I would sadly grant thee this boon. But, we have to continue to follow His Plan for us. Let’s go forth and speak no more of this. Who ever is last will be last. It will be His choice; not ours. We’re but humble custodians of His temple on earth. It’s not our place to trump His plan. Whatever that plan be, know that I will be with you to my last breath.” — character “John” in CHURCH 10●19●62 Volume 2 Page 399

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Sponsored by the National Center for Advancing Translational Sciences and Clinical Center at the National Institutes of Health (NIH), Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect and NIH research collaborations under way to address scientific challenges and to advance new treatments. The goals are to:

  • Demonstrate the NIH commitment to helping people with rare diseases through research.
  • Highlight NIH-supported rare diseases research and the development of diagnostics and treatments.
  • Initiate a mutually beneficial dialogue among public and private researchers, patients, patient advocates and policymakers.
  • Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.
  • Put a face on rare diseases by sharing stories of patients, their families and their communities.

Rare Disease Day at NIH will take place on Feb. 28, 2019, from 8:30 a.m. to 4:00 p.m. in the main auditorium of the Natcher Conference Center in Building 45 on the main NIH campus in Bethesda, Maryland. 

This year’s event will feature interactive panel discussions and more:

  • Collective research models for rare diseases.
  • Patient registries.
  • Rare cancer research initiatives.
  • No disease left behind, no patient left behind.
  • Posters and exhibits by rare disease groups and researchers.
  • Artwork, videos, and tours of the NIH Clinical Center and National Library of Medicine.
  • New this year will be a presentation of the first ever Zebbie award for the NCATS Rare Diseases are Not Rare! Challenge.

Please note that participants may be photographed or filmed as part of the event for use by the NIH and its designees for all purposes of education, instruction, or public information including publication or broadcast, print, television, radio, the internet, or promotional material. If you do not wish to be photographed, please indicate so on your registration form.

Admission is free, and the event is open to the public, including patients, patient advocates, health care providers, researchers, industry representatives, and government employees. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans.

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EVLYNN: Our Girl followed Grentz, Portland, and all the “Mighty Macs”



She followed them wistfully.  I assume imagining what might have been.

Requiescat In Pacem, Rene.  You’ll have at least one fan to greet you.

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MEMORIES: Summarizing a thousand days


Thanks to an iPhone app, I know that I have been in a “new” relationship for a 1,000 days.

I picked three pictures that sort of summarizes my thousand days.

2016 Jun 30 AMH Hidden Lake


2016 Jun 30 hat


2016 Jun 30 fjr hat


Who else could get me happy to wear a dumb hat?


It’s been a heck of a ride!

I’m still hanging on.

Thanks to AMH.

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