The Importance of Newborn Screening in SMA [VIDEO]

Hi DeAnn, I use a regular Bluetooth on my ear. I did a lot of research and so far, I found that the Plantronics Voyager 5200 is one that allows me to do most everything by voice. All except lock or unlock my phone, turn my phone off and on. It also doesn’t work with apps. It works solely with my contacts on my phone, text messages or WhatsApp and…[Read more]

Hi Alyssa, it’s very very bad. I am staying indoors except for the occasional grocery errand and doctor appointment. I had black mucous from my nose and incessant coughing for the better part of the week. I am 10 miles from the Bobcat fire. Although it is beginning to clear up, a humidifier would have helped. There is a policy that the California…[Read more]

Hi Alyssa, I don’t know about you but my doctor attributes my constipation issues to 1) the obvious of lack of muscle movement in the intestines which I’m sure you’re aware of and 2) lack of potassium. Turns out my body get rid of more potassium then it should. For me I have found that 2 to 3 glasses a week of Pedialyte moves things along. If…[Read more]

Hi DeAnn & Kevin! I’m so glad to be here. DeAnn I write singer/songwriter and adult contemporary genres. You can check out my songs on Soundcloud:

I definitely will be writing more here!

Be Safe 🙂

Hi Alyssa, I’ve been dying to get to this column. This a beautiful piece, and brave. I’ll have you know, I’ve been there. In the past 4 years I’ve watched my body, my small yet vital independence just fade, as if it never had relevance. It was almost impossible for me to wrap my head around the reality of ‘continuing’. But one night I heard a…[Read more]

I would not let anything stop me from a live show, I am an artist so music is everything to me. I’ve been through all of it; put off in the corner that’s supposed to be accessible but screams ‘crane your neck to see for 2 hours but you can’t because your disability doesn’t physically let you, or ‘can you hear the music from the foot of the stairs?…[Read more]

Embracing SMA is a process. I’m 51 and was diagnosed at age 3 and I still have struggles with what I think I can do, should be able to do and in actuality can’t do. For my mature age, accumulating accomplishments is important in our society. But I’ve learned to accept that it takes me much longer to meet deadlines and be ‘camera ready’ than most…[Read more]