Northwestern Mutual Foundation sponsored this post. All opinions are my own and may not reflect the sponsor's views.
On Feb 3, 2008, the United Nations General Assembly established World Sickle Cell Day to help raise awareness about sickle cell disease's most common genetic disorder in the world. This year, June 19, 2021, is our thirteenth year of celebration.
I remember celebrating my first World Sickle Cell Day in 2009 in Baltimore, MD, at a Blood Drive. Some people had sickle cell disease in attendance, and others were their friends and family members. In addition to giving blood, we talked and wrote letters to our senators about changes needed on a legislative level. My two babies were in my arms, and I sat down in the room, taking in the entire experience one moment at a time.
Now fast forward to 2021, I fully understand my role to help raise awareness as a mom to a warrior, an advocate, a children's book author, and a woman who is a sickle cell trait carrier. There have been tremendous amounts of growth and understanding related to sickle cell disease over the years.
This year is unique because I'm home and virtually amplifying the voices of the sickle cell foundations that I know. In addition to helping to raise awareness, Northwestern Mutual Foundation provided a virtual experience for families throughout the nation – The Ultimate Mini-Camp-In. As the largest Foundation in Wisconsin, Northwestern Mutual Foundation’s goal is to improve the lives of children and families in need.
Ryan Clark, an NFL Analyst on ESPN and former Super Bowl-winning NFL safety, led the fun. He spoke with us about his experience living with Sickle Cell Trait and sharing something we treasure. Ryan was comfortable and down-to-earth, and it helped put my daughters at ease because they were nervous about being on camera. During the Ultimate Mini-Camp-In, he talked with each of us and our families with care and compassion.
Parenting a child with Sickle Cell Disease can be challenging, so it was great to laugh and reflect on each other's positive experiences. I know it was terrific for my two children and me. The moment that will stay with us forever was when Ryan showed all of us his massive Super Bowl ring. Everyone's eyes grew large as he described the ring and told us that he had only worn it once before today.
Kisha Keeney, Northwestern Mutual’s Assistant Director of Diversity & Inclusion, hosted the event and stated that it was like being at a family reunion, and she was right. We learned about donuts, kringles, cream puffs and beignets. Overall, the Ultimate Mini-Camp-In was exceptional. We were all located in different parts of the country, such as Texas, Arizona, Wisconsin, Chicago, and Maryland, to name a few places where people resided who dialed into the call.
Ryan also empathized with the families by sharing moments when he experienced a sickle cell crisis as a pro athlete living with sickle cell trait. Hearing about his time in Denver when he had a sickle cell crisis was very surprising, but it was an experience I could relate to from my days when I also lived in the mile-high city.
Ten great ways to support Sickle Cell Families
In honor of World Sickle Cell Day and my journey as a mom of a Sickle Cell Warrior, I wanted to share ten great ways to support Sickle Cell Families.
- If you have a friend who is parenting a child with SCD or has SCD themselves, listen to their concerns and offer to help with specific suggestions within your comfort zone like ordering groceries on their behalf.
- Support an SCD charity by volunteering, attending an event like Northwestern Mutual’s Ultimate Mini-Camp-In, or donating to the organization.
- Amplify advocate voices. Social media is a simple way to let others know that you see what they are sharing and you are willing to share their information with your circle. Reshare their posts, tag a friend, and comment on SCD related posts.
- Read books about SCD and share the books with others.
- Donate blood or host a blood drive.
- Support bills and legislation to increase Sickle Cell related research and funding.
- Share encouragement. Please send a card, text, call, etc., to let the families know you're thinking of them.
- Join the Be the Match Registry to see if you can become a possible bone marrow match for someone else.
- Get tested and learn your genotype. Many people may not be aware that they are sickle cell trait carriers, so know your status.
- Last but not least, get to know sickle cell patients because they are extraordinarily talented people.
The Northwestern Mutual Foundation supports exceptional patient care for families affected by sickle cell disease and also fosters meaningful connections and lasting memories for families at events like the Ultimate Mini-Camp-In. Therefore, we should keep these ten tips in mind all year and do a little bit every day to remember those with sickle cell disease.
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