Global Genes Summit
Development Manager, Katie Jensen recently traveled to the Global Genes Rare Patient Advocacy Summit to learn from and collaborate with other rare disease leaders. Read about what she learned, who she met, and why she’s even more inspired for the Patient Benefit Conference & LAMposium LA!
From the start, Kristy and I committed ourselves to giving all we could to support The LAM Foundation’s research. But after a couple of years I realized there is only so much that one family can do alone. So, I decided I was going to have a “fund-raiser”.
I had heard many of the success stories about patients, their families and friends having fund-raisers. But, even though I have always enjoyed giving to other people, the idea of asking for money for myself (or even for my family) makes me uncomfortable. I know that a lot of people probably feel this way, but this just was too important to let those feelings deter me.
Registration for the Patient Benefit Research Conference is officially open! The LAM Foundation staff is super excited about this conference, but we also realize the concept may still be unclear to many who might want to attend. I wanted to take a few minutes to help provide a better understanding of what it is and what you might learn by attending.