Lupians Unite!

As we round the corner towards 2023 I thought it was a good time to reflect not only on the last year, but also the chapter as a whole. 

It has been a privilege to serve as the leader for this chapter for several decades. It brings me great joy to see the progress we have made and while the journey has been hard, we continue to find ways to be the driving force behind lupus awareness and resources in Ohio.  This is all because of the incredible work our community continues to do on a daily basis.  However, the work is not done.  The mission is far from accomplished, and we will not stop until it is. Ultimately, we want to eradicate lupus. We want to live in a  world without it. In order to get there we must first climb mountains, swim the seas, and weather whatever storms come our way.  We will do this together.  

What We’ve Accomplished

First and foremost, what is lupus? Who really knows? If you tell someone you have lupus or are diagnosed with lupus, they probably look at you with confusion. We know that most people today have heard of lupus, but sadly they still do not know what it is.  Ouch!!! On many fronts this is painful.  Do not expect any empathy from those who do not know what it is. For us to accomplish our goal everyone must KNOW LUPUS.  The world today is vastly different than it was in 2019.  This is a conversation for another time.  But I want to reflect on all the wonderful achievements we have done for those impacted by lupus here in Ohio since then.

1. Local Support groups across the state: these offer peer to peer support where you can come together and be encouraged and share your journeys. No one should be alone for lupus.
2. We have presented numerous educational summits and messaging throughout the year with leading experts in the area.
3. We continued to support research and clinical trials which led to THREE new lupus drugs getting FDA approval.  The first new drugs to hit the market in over a decade!
4. By some miracle, we were still able to hold our annual walk’s, and while they may have looked a little different they were still a giant success providing critical funds to help support our chapter.

How You Can Help

All of these great achievements happened because of you and your support.  So why the conversation?  Well, quite frankly, A lot of you have been very quiet recently.  Together with the Board and the staff we will be working on a new strategic plan for the chapter.  It must include you. If you have an unspoken need please let us know. We will do our best to find the resources you need.  But for us to do more, we must all do it together!

You can start by creating the much-needed awareness for lupus, and the need for research and support. Start with your family, friends, neighbors, and coworkers, mail man, hair stylist, waiter, waitress, and absolutely anyone who will listen!  Create your elevator speech. We need you to be the person who loves to be a change in the world.  You have the power, and we could use your help!  

1. Consider being a volunteer
2. Help us identify new Board Members
3. Create a team for the Walk to End Lupus Now
4. Put us in your annual budget
5. Spread Awareness about lupus (In Person or on social media)
6. Join a support group
7. Help us with advocacy

Can you believe our chapter turned 45 this year?!?!   We have come such a long way in the last four decades but there are no plans to rest on our laurels.  We have big goals and plans for the year ahead, and will be providing more information after the holidays.  We need your help to achieve them!  Remember there is no I in lupus, only US! 

I hope you all have a joyous holiday season, and look forward to hitting the ground running next to you in the new year!  

Onward and Upward

Suzanne Tierney