My Nonprofit Reviews
Shannon Burkoth
Review for CDH International, Wake Forest, NC, USA
Such an amazing organization! CDH is all about the babies and families, dedicated to making progress and save lives. The research and programs are patient centric, led by stellar volunteers and advocates. The passion is real!
Review for Project Sleep, Los Angeles, CA, USA
Project Sleep is an amazing organization dedicated to and passionate about raising critical awareness about narcolepsy and sleep disorders. PS spearheads several initiatives each year including policy, research, awareness, and education. PS also equips advocates to share their story through the Rising Voices of Narcolepsy program. I am so grateful for Project Sleep!
Review for Global Genes®, Aliso Viejo, CA, USA
I was first introduced to Global Genes at a narcolepsy meet-up held in Chicago, in 2016. This is where I caught the advocacy bug, so to speak. I have attended several GG events. My favorite and •must attend• event each year is the Rare Disease Patient Advocacy Summit held every September in southern California. The networking, collaborating, and programs offered are invaluable! The staff and speakers are always stellar and the GG team is genuinely passionate about rare disease! I am grateful for the plethora of programs and resources that GG brings to the rare disease community all year through.
Review for Narcolepsy Network, Inc., Lynnwood, WA, USA
When I was diagnosed with narcolepsy in 2010, the doctor basicly told me I had narcolepsy and handed me a brochure for the Narcolepsy Network. It was through the Narcolepsy Network that I learned about my condition and realized what I was facing. The resources available on their website are invaluable to both patients and their support systems. Narcolepsy Network has been instrumental in raising awareness and providing support to those of us living with narcolepsy. I am especially proud of the youth ambassador program and informational products they design and distribute to help advocate for students and people in the workplace. The yearly conventions are a place where you feel normal and empowered by the presence of others facing this rare disease and making life long connections. Thank you for all you do for all of us!
