Hello, my book loving friends!

I raise funds every year for the ALS Association (ALSA), and this is my annual appeal for donations.

ALS (Amyotrophic lateral sclerosis) is a progressive neurological degenerative disease that affects a person’s ability to control their muscles because it destroys the motor neurons that connect the brain to those muscles. An ALS patient loses the ability to walk, use their hands, raise their arms, eat, speak, and even breathe on their own.

Every year, only around 5000 Americans are diagnosed with ALS, which makes it a rare, orphan disease. This means it’s not lucrative for pharmaceutical companies to find a solution. Intrepid researchers are funded by federal grants and organizations such as ALSA. While there have been advances, progress has been slow. It’s a mysterious and cruel disease.

I was diagnosed with ALS in August 2011, so I just hit my 14th anniversary. Most ALS patients have a life span of 3-5 years following diagnosis (it’s 100% fatal) so I’m one of the lucky ones.

I’ve been completely paralyzed and on a ventilator for about 10.5 years. I love my life despite my physical limitations, but the descent into paralysis was frequently heartbreaking. I cried the first time I couldn’t pinch my fingernail clippers hard enough, cracked my head on the curb after stepping over it (it’s true what they say – head wounds do bleed a lot), and lost a ton of freedom when I had to hang up my car keys. One of my daughters said, about two years after my diagnosis, that she could barely remember when I walked normally. My last solid meal was chicken lo mein 11 years ago, I think. I’ve lost track. And I was really, really, REALLY mad at my athlete’s body for betraying me.

I’m not telling you this because I want sympathy. I just think it’s important that people understand a little bit of what ALS patients experience. In a word, it sucks.

In addition to funding research, ALSA helps ALS patients and family members / caregivers negotiate the physical and psychological realities of the disease. For example, they sponsor multidisciplinary clinics that make receiving care much more convenient, and caregiver support groups allow family members to receive tips and support from others.

With the new administration’s focus on financial austerity, ALSA is concerned that funding for ALS research will be cut. This makes private donations even more important.

If you would like to contribute to finding effective treatments for this horrendous disease, you can do so by contributing to my walk team at this link.

Thanks for reading and thank you in advance for your donation!

If you have any questions about my experience with ALS, please comment or message me. But if you’re trying to sell a “miracle” combination of supplements or other sham “cures” for ALS, I really don’t want to hear from you.

And to everyone who has already donated, a huge thank you!! Your generosity means so much me!