Opinions
The Power of Unplugging
By Kevin Freiert My wife and I recently had the opportunity to take a trip to Israel. In addition to the wonderful sites, the new friendships we made with others in our tour group, and the joy of strengthening our faith; we by necessity had to just unplug from work. Sure, Israel has good internet…
Read MoreA Safe Place to Practice My Story
By Kevin Freiert Life has a way of filling up quickly. Having a rare disease, or being a caregiver to someone who does, makes every day feel a little busier, doctors’ appointments more frequent, and the list of things to remember a little longer. When asked to share your story, it is easy to lose…
Read More2022: A New Beginning
by Jamie Roger The last few years have been hard. Hard for humans, and equally as hard for a business that just started to feel growth before COVID put projects, funding, and plans at a standstill. 2022 felt like a new beginning. We were able to travel again to see so many familiar and lots…
Read MoreThe Shortest Timeline to a COVID Vaccine
Dr. Stephen Hahn, Commissioner of the FDA has stated that the FDA will be able to grant Emergency Use Authorization before the end of the Phase 3 Trials. That is absolutely true but the ends of the Phase 3 Trials are in 2022.
The real question is,
“When is the earliest that an Emergency Use Authorization could legitimately be announced?”
Anything but Ordinary
Our experience at Global Genes Rare Patient Summit I think what needs to be pointed out in that title, is the word RARE. This conference is anything but ordinary. The attendees are amazing and consist of a diverse population of patients, experts, consultants, and advocates who are all teaming together to try to drive change…
Read MoreIt’s your first day
Right now, you are alone. When a college student arrives on campus for their first day of freshman year, they are typically alone. They haven’t yet found a close friend, they haven’t started classes yet to meet anyone, and their roommate is more than likely a stranger. They are a single human trying to get…
Read MoreSummer Reading: Books That Matter
What makes a good story? I have recently had the opportunity to read several books written by people who are faced with some sort of medical adversity. This has only reinforced my love for a good story, especially one that teaches lessons beyond the action. Each of these books started with something familiar, something I…
Read MoreLost is a Starting Point.
Lost is a starting point. It’s okay to be lost and not in control. But nothing is going to change if you don’t start. Start talking to someone, start educating yourself, start finding other people who may be lost. The most valuable component of your mental health is being aware of it, and what you…
Read MoreAll I have to do is tell my story?
Attending conferences has played a beneficial role in my understanding of the importance of my work. I believe that in order to succeed at what you are doing you need a clear understanding of a shared goal but also an internal motivation to achieve that goal. I am also aware that the best way for…
Read MoreWelcome to Narnia
New beginnings aren’t always scary, Right? In February I decided to open the door to a world that I knew very little about. I had a willingness to embark on this adventure but no idea what I would find. Turns out, I was right about how foreign this new world was (and not just the…
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