August 24, 2021 at 8:25 am #20323
Good morning ALS News Today Forum Members,
As many of you know I am a school psychologist by day, and moderator by evening :). I started working with BioNews about 2 and half years ago. When Dagmar and I started we were told that we just need to welcome new members, and post a few topics each week and monitor the forum. Simple right? Well, this “job” that is suppose to take 15 – 20 minutes a day, is much much more to me than a job. I think many of us are drawn into fields because of our unique gift sets, experiences and education. I’ve always been in the service field in some manner. I’ve been a addictions counselor, youth counselor, crisis response worker, waitress/bartender (blast) and for the past 18 years I’ve been a school psychologist. This job, is so much more than just a job. It’s a community of people that I have become deeply connected with and care about. Being a moderator has taught me so much more about ALS than I ever thought I would know. It has taught me more about human nature, and myself than any other position I’ve held.
I’ve been volunteering for the pre-fALS study since 2011. Prior to that my family volunteered for two studies at the University of Washington in St. Louis. (yes we are lucky for having such a high rate of ALS they did a study just on my family — please sense the sarcasm 🙂 ) I’ve been reading and researching ALS for decades, but getting to know each of you online has taught me more than I ever imagined.
ALS is a thief, and it robs all pALS and their loved ones. At times, I get frustrated that there isn’t a cure yet; and at other times I recognize all of the advancements that have been made over the past two decades. I believe the the researchers are narrowing in on a cure/treatment for some pALS, but that won’t come soon enough.
You, our forum members, have turned this part-time job into a passion for me. I’ve learned so much from how different people approach adversity in such different ways. I’ve learned how some people, even some with very negative approaches to life, try to see the positives and how difficult that can be for them. I’ve watch/read how others have turned Advocacy into a passion. I read as some of you share your fears and worries, and I’ve seen how other forum members reach out with warmth, support and encouragement. Many of your questions and post prompt me to research topics related to ALS, mental health, clinical studies and much more. I’ve become friends with some of you on FB, zoom meetings and I even learned that a few of you live in the same town as I live.
I hope that you know regardless of how you contribute to the forums, ALS advocacy or fundraising, you have all made a major contribution within the ALS community by supporting one another. Our members are a reminder every day just how important ALS News Today is to you, and how we can support others in need. You are an inspiration, a reason, and you give others hope. I am honored to be part of this online community.
Just a few of my rambling thoughts this morning 🙂
I am grateful for all of you, all of my experiences, and the opportunities I’ve had to participate in ALS research. You motivate me to continue and seek out more ways to contribute. — What are you grateful for?
August 24, 2021 at 3:14 pm #20327Bob IvesParticipant
Hi Amanda, Thanks for today’s post as well as your many others … they make a difference! It’s helpful for all to be part of a community which openly shares and communicates … which is what you, Dagmar, Bionews and our fellow readers have created. As a graduate engineer my literally skills are grossly limited, thus infrequent contributions. But I scan each day’s content and select items of interest which broaden my understanding of this dreadful disease and offers suggestions to make my life better. Thanks to you and all the others … keep up the good work. Bob Ives
August 25, 2021 at 7:05 am #20334
You are very welcome!! We are supposed to help encourage discussions. Sometimes it is difficult to think of a new and interesting topic. I feel like I’ve gotten to know some of our members so its personal now. So, I figured why not post a personal discussion topic 🙂
Thank you for all of your contributions! They definitely matter to our members.
August 25, 2021 at 6:38 am #20333Mary TiknisParticipant
I am grateful for my family and friends.
I am grateful for the ALS clinic
I am grateful for the foundations that help us get what we need to live a better life.
I am grateful for ALS news today for encouragement and feeling connected to others going through this awful disease.
Mary Ann Tiknis
August 25, 2021 at 7:19 am #20335
Thank you Mary!! BioNews, our parent company, is an amazing organization that truly cares about people.
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