On May 5th, I am making up to a $10,000 donation to the Siegel Rare Neuroimmune Association as a matching gift for #GivingTuesdayNow, a new global day of giving and unity as a response to the unprecedented need caused by COVID-19.
I am making this contribution with a real sense of urgency but also with a deep sense of gratitude.
We are going through one of the most difficult, perilous, frustrating and frightening times in our lives. We are concerned for our loved ones, we are concerned for our futures, we are concerned for our society and our world. As a rare disease community, we share heightened concerns about our health and our well-being. We all share concerns about our physical health. And we share concerns about our emotional and mental health. Many of us are shut in and alone. Others are having to negotiate the complicated and challenging reality of having to allow caregivers into our homes to assist with all our quality of life issues. The physical and psychological difficulties are not going to disappear any time soon.
At the same time, the financial toll on all of us is incomprehensible and staggering. So many of us have been living on the smallest of or no reserves, struggling day to day to make ends meet. Millions of us have lost jobs. Many of us either work in or own small businesses that have been forced to close. Whether those jobs become available is uncertain. Whether all those businesses will be able to reopen is uncertain. The stock market tumbled with this economic uncertainty. So many of us who rely on pensions and investments for our retirements have been handed a massive dose of doubt about our futures.
During this public health and economic upheaval, I have concerns about funding continuing operations at the Siegel Rare Neuroimmune Association. We are a small business; a small business that has nothing to sell to generate revenues. We offer the most critical services to a very large community that includes people with rare neuroimmune disorders and their families, the medical professionals and medical and academic centers who care for our community and perform research, other non-profits and medical and pharma companies with whom we share goals, government agencies involved in research and public health issues, and international organizations who serve our members from more than 110 countries around the world. We serve a very large community, and the work we do is so critical because our community depends on our efforts and no other organization does what we do.
I am beyond grateful that we have been able to keep our six employees and our legion of volunteers working. We all work from home. Thus, being on lockdown at home has not impacted the work we do every day. We remain connected to our community offering support. Our education efforts continue. Our research programs are ongoing. How we are offering these opportunities has changed and will continue to change as we engage in physical distancing. Our support groups and education programs are going to be virtual. Our family camp this summer will be virtual. While we will miss all these face-to-face interactions with our community, we are hopeful that we will also get greater participation from people who have difficulty traveling to our events.
SRNA has always operated with very low overhead, and we are taking steps to even further reduce our costs. For the foreseeable future, we are going to curtail the printing and mailing of our publications. While you won’t be receiving our materials in the mail, we will continue to offer all of the educational information we’ve always provided, and in fact, we will be able to include even more content without the concern for printing and mailing costs. Please be sure our information is not going into your spam folders. We don’t want you to miss any of this important information. It is also a good time for you to find us on our social media sites and to spend more time reviewing the wealth of information offered on our website.
SRNA’s current and long-term survival depends on generous contributions from our community. With the economic concerns that face almost everyone, our donations have dwindled. We understand why this is happening. We have only the greatest compassion for the many struggles people face day to day. People want and need to return to work. People are being crushed by the financial stresses that impact their families.
It is a horrible time and a difficult situation to be asking people for money – but I must. The future of this organization is at stake.
I know many of you can’t. I am so sorry for this entire situation and the horrible predicament with which you are dealing.
If you can give, I implore you, please do. Now is the perfect time to contribute. If you can make a difference for this organization and for our community, this is the time to make that difference. Any donation you make to SRNA on May 5 will be matched dollar-for-dollar, up to $10,000.
On May 5 you can:
- Join our Facebook #GivingTuesdayNow Fundraiser
- Give directly on our website
- Send a check mailed to SRNA
- Donate by texting the word “SRNA” to 76278
- Start your own #GivingTuesdayNow fundraiser via Facebook or our website
- Spread the word and share this with family and friends
I am making my donation in memory of Pauline Habib Siegel – the person who has inspired me to do this work for the past twenty-five years. Her memory should be a blessing.
— Sandy Siegel, President of SRNA