Browsing Tag

Multiple Sclerosis

Multiple Sclerosis & HIV: An Unlikely Connection

Causes, KB's Journey

This week, I’ve been thinking about my mother a lot. Mainly, I’ve been thinking about how proud she would be to see how far I’ve come with my career, my personal life, and with Red Pump. We started Red Pump a year after she passed away and I can’t help but to wish that she was here today to gush over my photo in Essence or to reassure me when I’m too exhausted from juggling so many hats.

For me, my mother was the prototype for fabulous giving. As a teen, she volunteered with different groups and also taught a Sunday school class at her church. When she moved to Chicago, she continued her season of service and found groups to devote her time and attention. I’ll never forget how she would take us with her on Monday nights when she tutored foster children at the Harold Washington Library. Her commitment to that role landed her a Volunteer of the Year award from Volunteers of America. I still display that award proudly in my home as a reminder of how far doing good can take you.

Living with multiple sclerosis inserted many challenges in her (and our) day-to-day life. I’ve shared before about my experience as a youth caregiver but that is only part of the memories. For every challenge, there were plenty of happy moments. I just wish that her MS wouldn’t have gotten in the way of us creating so many more.

 

2015-MSAW-Logo-with-Dates

 

This week is MS Awareness Week, a time where we are asked to take action to help others learn more about MS and what they can do to make a difference. One of the asks of the National Multiple Sclerosis Society is that we spend this time “creating connections stronger than the ones that MS destroys.” For me, the connection that I have to health education and activism is far greater than anything that this disease could EVER destroy.

The fight against multiple sclerosis was the first cause that I’ve ever rallied behind. In high school, I volunteered at the annual MS Walk, did multiple presentations on MS, and racked up service hours after school in their office. I continued that commitment in college and in the years right after my graduation. At this point in my life, I don’t have as much time to physically devote to MS and it would seem that HIV has “stolen the show” so to speak. That’s not the case. I will never forget (or forgive) how multiple sclerosis has impacted my life, or the role that the disease played in my mother’s passing.

Without a life impacted by multiple sclerosis, I don’t know if I would be as passionate about causes or service. I don’t know if I would have the tools or desire to be an advocate. I don’t know if I would have ever started The Red Pump Project. So, as I recognize MS Awareness Week, I will make a donation to my local chapter of the MS Society, but I will also raise my voice louder for anyone who needs a champion. From MS to HIV, it is my sincere prayer that my efforts make an impact.

More importantly, I pray that I continue to make my do-gooder mother turned angel proud.

To learn more about multiple sclerosis, a debilitating neurological condition, check out this helpful section on the National MS Society’s webpage.

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Kid Dangerous Wants to “Erase MS Now”

Multiple Sclerosis, Shop for A Cause

I hate multiple sclerosis so naturally I love this tank ($30) from Kid Dangerous Grime Couture. The brand designed the shirt to support the Nancy Davis Foundation for Multiple Sclerosis and 100% of the proceeds will go to MS research.

Don’t worry, guys…There’s a tee ($35) for you as well.

I’m doing a 40-day spending fast with my church so I can’t buy this shirt for another six weeks, but trust me…I will be ordered as soon as I can!

-kb

A Tale of Two Causes

HIV/AIDS, KB's Journey, Multiple Sclerosis


All of my life, my #1 cause has been multiple sclerosis. I watched my mother fight the disease for almost 30 years, and learned to hate every single thing that this disease is capable of doing to an individual and their families. I volunteered for the MS Society, learned about the disease and took every opportunity to educate others about MS.

When I started The Red Pump Project in 2009, I picked up another flag to carry. This time, my fight centered around educating my peers and others about the impact of HIV/AIDS on women and girls. Being in this position has been a blessing and an eye-opening experience but I have a confession to make…

*whispers* I feel guilty about spending less time championing the fight against multiple sclerosis.

I hope that doesn’t sound crazy to you because I almost felt crazy typing it. After all, we can all stand for more than one cause and support more than one organization. But, for me…with my personal story, I feel like I’ve turned my back on something that was once all I could think about. When I promote the MS Society or encourage people to support the organization, I feel this tug like, “Should I be using my connections and networks to promote Red Pump instead?”

So, for now, I continue to be torn…Torn between a disease that strikes at random and a disease that can be prevented. One disease that affects all Americans and one that is disproportionately affecting LGBT and minority communities. I shouldn’t feel this way but I do.

I used to feel that my decreased involvement in the fight against MS meant that I was forgetting about my mother and her life. But, then I remember that she’s probably very proud of my work with Red Pump. I don’t know…I’m sure that I will get over this hump soon. The anniversary of her passing is this month so maybe that’s a factor in this little guilt-fest. Yeah, I’m going to chalk it up to that…but I’m still going to re-up my involvement with the Society in the meantime.

I think that should do it.

-kb

Not Until There’s a Cure for MS

KB's Journey, Multiple Sclerosis

Today is the last day of MS Awareness Week. As many of you know, multiple sclerosis is an issue close to my heart because my mother fought the disease for almost 30 years before passing away in April 2008. The purpose of MS Awareness Week is to educate the public abut the impact of this debilitating disease and to encourage all of us to take a stand against MS by making a donation, volunteering our time, and/or sharing our experiences.

Watching my mother battle MS was the most difficult experience of my life. I watched her go from a cane to a walker to a wheelchair to being bedridden during the last 31 months of her life. There were many times when I had to leave the room so that she wouldn’t see or hear me crying when she told me that she could no longer read the side of a cake mix box. Watching your “she-ro” slowly lose control of her body took my mind, heart, and faith in many different directions.

There was the guilt. One time I came home from college and realized that I left my keys in Chambana. As I knocked on the door, I remember thinking “Is she sleeping? What’s going on?” When she opened the door, I looked down and saw her on the ground. Turns out that she’d pulled herself across the floor from her bedroom to the front door because she had to let her daughter in the house. GUILT. I cried silently for hours in my pillow because I felt so terrible.

Or there was the time when I came home to find out that my mother had been sitting on the floor for over a day because she’d fallen out of her wheelchair while reaching for something and her caregiver had the day off. I mean, as a young person living the life in college, I began questioning myself as a daughter. How can I be away at school living it up and my mother was at home dealing with these things? I thought about transferring to the Chicago campus to be closer to her, but she refused. “No. You stay down there and finish… in Champaign.”

That selflessness and sacrifice is what I think of every single day when I remember my mother and when I think of every parent battling multiple sclerosis. It takes an immense amount of sacrifice to turn your children loose into the world when you know that you could use their assistance at home.

Throughout her fight, my mother remained selfless and giving. Smiling when she preferred to cry. Encouraging us when her hope was gone. Even in her passing, there was an element of giving. She gave my sister and I the “freedom” to pursue our dreams. She empowered us to take her legacy and story and use it to change our lives and the world.

When I volunteer at the MS Society, I love meeting parents with MS who have young children. I love looking at them and telling them that although it will be difficult, it’s not impossible. My mother did it. They will do it. And, their children will love them even more for it. After all, those of us affected by multiple sclerosis are warriors. We fight every single day as this disease continues on its destructive path. But, we will never give up. Not now…Not never…Not until there’s a cure.

29 Gifts and My Personal Challenge

KB's Journey, Living & Giving

book-cover

A couple of weeks ago, I was surfing MSNBC.com and came across a clip of Cami Walker on The Today Show. Cami was on the show to talk about how the recommendation of an African healer led her to give 29 gifts in 29 days as a way to cope with her recent diagnosis of multiple sclerosis. Let me get this straight. A young woman living with multiple sclerosis was going to talk about the power of giving? I had to watch…and in the process, I had to pray that I wouldn’t burst into tears particularly because I work in a room with four other people.

Listening to Cami, I heard her tell a story that I’m all to familiar with…Young women just beginning their path into adulthood, marriage, or parenthood suddenly find themselves trying to understand and live with a diagnosis of multiple sclerosis. It was my mother’s story. Cami was diagnosed one month after her wedding day at the age of 33. As she navigated the difficult physical and emotional changes, she received some advice from a friend of hers who was an African healing woman. Her friend told her to give 29 gifts in 29 days. The reason why? “By giving, you are focusing on what you have to offer others, inviting more abundance into your life.” *church hand*

As Cami gave, she noticed that the positivity and selflessness that she gave to the world was reciprocated in ways that she couldn’t have imagined. At the end of her interview, I was intrigued, motivated, and a little teary-eyed. A colleague of mine recently asked me why I was such a good person. I told her that my giving spirit is motivated by my mother. In the midst of her health battles, she always found room to give to others, to care, and to share. For that, I believe that God kept a special eye on her and her family. And, that is the kind of grace that I want to have over my life.

Cami’s story hit home for me in the realest way, so I decided that I needed to read her book 29 Gifts: How A Month of Giving Can Change Your Life AND take on my own 29-day giving challenge!

If you want to follow along with me, be sure to check out my page on the 29-Day Giving Challenge Ning site, as well as Twitter and here. I will tag any tweet related to my challenge with the hashtag #29days. I hope that you’ll stick with me as I take this on head first and walk into the new year with a new mindset.

Please check out 29Gifts.org to learn more and you can watch Cami’s Today show appearance below.

Can’t Tell a Story Without a Voice

KB's Journey

finding my voice

I have a confession to make.

In the past, I haven’t been good at fundraising for the causes closest to my heart. Now, I’ll volunteer all of my time and give my own money in a heartbeat, but I never really been comfortable asking others for their time or money. Why?

Well, that requires some story-telling and sharing with others my connection to the cause. Until recently, I wasn’t really comfortable doing that. I’d just tell a soft story in a small voice by simply saying something like, “Oh, my mom has/had MS.” Well, who does that really motivate? Who does that really inspire?

This morning, my mind drifted back to a conversation that I had with my uncle. A couple of summers ago, we were walking along the Chicago River, and he said that he couldn’t understand why his sister (my mother) had to live with this disease. He asked the question that we had all asked ourselves at one point in time, “Why her?” As the warm wind blew across our faces, I turned to him and said, “Through it all, she’s never stopped being positive, loving, or caring. God is using her story to inspire people.”

When my mother passed away at the age of 49, I asked myself a very serious question, “If I had only 25 more years left on this Earth, what is the story that I want others to tell about me?”

Better yet, “What is the story that I want to start telling?”

These questions helped jumpstart the process of finding my voice. The unshakable, unwavering voice of a person who knows what she wants to say and won’t be silenced.

This year, I’m REALLY pushing myself to step it up as it relates to two issues: multiple sclerosis and young caregivers. I hope that telling my story will motivate others to find their passion, follow their dreams, and support their causes. And, I refuse to let it stop there.

I know that we are all busy, but I’m challenging you to find a cause that you believe in. Then, start thinking about how your story can make a difference. After all, you never know who’s listening or being inspired at that moment.

National Multiple Sclerosis Society Scholarships

Living & Giving

Last year, when my mother passed away, my sister and I decided that we wanted to make a donation to the National Multiple Sclerosis Society’s scholarship program, in her honor. The scholarships assist high school students who either have a parent living with MS or who have MS themselves. My mom was a very big believer in all things education, so it was such a natural decision!

Now this year, in addition to planning events to keep my Mom’s scholarship alive, I’ve been asked to assist the Greater Illinois Chapter with their scholarship drive campaign! I’m actually heading over to the Chapter office now to help craft a letter explaining why it’s so important to support these scholarships. The letter will be sent to various donors, so am going to really make sure that my voice/POV are heard in that letter! It definitely won’t be hard for me to think of reasons! I’m very grateful to have this opportunity and really hope the campaign does well!!!

To find out more about the MS Society’s scholarship program, you can click here!

I’ll talk to you all later!

KB’s Journey: DC + MS

KB's Journey

Hey, all! Happy Monday! I’m in DC this week and very excited about hanging with friends and family (once they arrive from Chicago)! This week is looking to be a busy one for me. Today and tomorrow, I will be volunteering at the Capitol chapter of the MS Society! This weekend is the huge Capital Challenge walk, a two-day, 50 K walk to raise funds for MS research and programs. I don’t know if you remember this, but I was training to participate in this walk earlier in the summer. However, due to a scheduling conflict on Saturday, I won’t be able to join the walk! Whomp, whomp 🙁

I’ll be spending my days helping assemble rest stop boxes, organize signage, assemble walk packets, etc! I’m looking forward to my two days in-office, and really blessed that my company has a “Charity Days” program. Employees are allowed two days/year to volunteer at their favorite charity. Does your employer have a program like this? If so, I strongly encourage you to take advantage and use those days! A lot of nonprofits run on small budgets, so anytime they can have (free) help around the office…GREAT!

Alright, guys…I’m off to catch the Metro into the office (wow…I sounded like a true DC-er)! I’ll keep you posted on how my two days go!

We Love to Erase MS

Buy This!

 

So, one of the causes closest to my heart is finding a cure for multiple sclerosis! I’m always looking for different ways to donate my time and money for programs, research, etc. So, imagine my delight when I came across these cute “We ♥ To Erase MS” orange tees (I ordered mine last week)!

 

 

MS Tees 

   

These tees were designed by Tommy Hilfiger, a long-time supporter of MS research, and 100% of the proceeds support the Nancy Davis Foundation for Multiple Sclerosis. The signature event for the Nancy Davis Foundation is the celebrity-filled gala, “The Race to Erase MS” featuring among many other things a celebrity fashion show by Tommy Hilfiger. This year was the 15th anniversary of the gala and raised over $2 MILLION dollars to support MS research!

 

Click here for more information on the tees! While you’re on the site, be sure to check out the other stylish merchandise for sale including super-chic orange leather bracelets from Alexandra Richard and some flirty orange nail polish…Just in time for summer!

 

KB