The holidays are once again upon us; a time to be thankful for all we have and to spread goodwill to all.
I would like to take this opportunity to reflect on what I am most grateful for today, and every day: my mother.
Many of you know MSA NJ’s story - we founded this organization after losing our mother, Dolores Roemer, to Multiple System Atrophy on Mother's Day, 2009 – but I would like to share with you all some qualities of my mom's that are a true testament to her spirit.
As long as I can remember, people were always drawn to my mother. Family always relied on her guidance in the form of wise and encouraging words, friends would show up at the house and wind up hanging out with her in the kitchen rather than with one of us kids they were actually there to see, and strangers would open up to her as if they had known her for years. Mom had a comforting and nurturing aura about her that was so natural and effortless and could be felt by anyone in her presence. She never turned anyone away, no matter the time, or day, or what was going on in her life.
Mom also had an incredible love for life; always up for a good time! I could swing by her house unannounced and no matter what she was doing she would drop it if it meant quality time with her baby. In the middle of cleaning the house, no big deal (the housework will still be there tomorrow, she’d say), she would go change her clothes and be ready to go on an adventure of any type. Whether it involved eating, exploring, travelling, shopping, singing and dancing, or just talking, Mom never turned down time spent with the people she loved.
There are so many things I could share about my mother, I could literally go and on… But just focusing on those two traits, made us realize we had to do something to honor her and be sure her legacy of giving and exuberance continued. And thus, MSA NJ was born. I am grateful that in spite of the gravity of her diagnosis, we spent quality time with Mom, not taking any moment for granted. I am also grateful that through her illness, we can now make a difference in the lives of others impacted by MSA.
As you all know, MSA is an utterly horrible and devastating disease, one nobody should ever have to endure. Mom never let that diagnosis define her, nor did she ever let it stop her from doing the things she wanted to do as long as she was able to do them. If she were here, she would be our community’s biggest cheerleader, telling everyone to live your life to the fullest and to make the most of your time by spending it doing the things you love with the people you love. And while MSA NJ cannot take the MSA diagnosis away, it is my sincere hope that we can at least make your life better through our support focused on the patient and caregiver. We want to provide the opportunity to connect you to your community, to your fellow journeymen, for moral support, shared knowledge and resources, positive medical and technical advancements, and sometimes, just some good old fun!
In order to make these events come to fruition, we rely on the generosity of our donors. All services provided by MSA NJ are done at no charge to patients and/or caregivers. We’re able to continue this practice through our fundraising efforts such as Giving Tuesday.
With that said, I’d like to invite all to participate in MSA NJ’s 2017 Giving Tuesday fundraising campaign. MSA NJ provides support services to our patient and caregiver community through support groups, resource sharing, and our annual medical conference. In addition, we contribute to the MSA Coalition research fund.
Please help us to continue to provide the services our community has come to rely on over the years. For example, funds received from our Giving Tuesday campaign will help off-set the cost of our upcoming 2018 Annual Patient and Caregiver Conference (to be held 3/24/18).
Some testimonials from last year’s event:
“I just wanted to let you know how impressed my sister and parents and I were with the MSA conference. The room was comfortable, the food was much appreciated, and best of all, the speakers provided clear, up-to-date information that is hard to find anywhere else! The vendors provided useful information, too. Throughout the day, it was clear that everyone involved in setting up the conference, and those who presented, all care very much for people with MSA and their families and care-givers. We were moved by your family's love for your mother and dedication to the cause of finding a cure for MSA. Thank you so very much for all you to do to offer support to families like ours.” ~ Christa Tinari (Caregiver)
“Many thanks to you and the team for a great conference. My favorite part was meeting and talking with the other folks with MSA and their caregivers. This was my first MSA gathering and it was reassuring as well as informative to meet others in the same boat.” ~ Rick Stevens (Patient)
Remember, no gift is too big or too small; each and every contribution makes a difference to our cause. Please feel free share this campaign with others who might be interested in supporting MSA NJ.
Thank you for your time and may you all have a wonderful holiday season filled with peace and love.
MSA NJ Board Chair