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African American patients have only a 23% chance of finding a donor - Let's Change That

People

Like most people, Tiffany Davis hoped she’d never have to battle cancer. But now she’s facing her second battle with the deadly disease. The thirty-two-year-old from Miami, FL graduated with honors in the top 10 percent of her class from Miami Jackson Sr. High and went on to Florida A&M University to earn a Bachelor’s Degree in Health Sciences and a Master’s Degree in Healthcare Administration.


Before fighting cancer became her “career,” Davis was a Financial Counselor at a local hospital. “I have started some entrepreneurial projects. I'm a brand ambassador for a health and wellness company as well as a Certified Lash Technician and looking into going into beauty school.” But cancer doesn’t care about any of Davis’ credentials or successes. Cancer is an undiscriminating beast.

Davis was diagnosed with breast cancer when she was twenty-eight-years-old. It was December 19, 2014. She discovered a lump under her left armpit, and due to her family history of breast cancer, she told her gynecologist that she was concerned. That’s when she found out that what she feared was true.

Getting through chemo, double mastectomy and radiation was only possible with the support of her family and friends and even strangers, “Once I decided to share my journey through social media, I received a lot of support. My family and friends also accompanied me at every chemo appointment. I never had to go through any of this alone.” Davis says her family is everything to her. “They are super supportive. I am the oldest of three siblings from my dad and I’m my mom’s only baby.”

“Once I decided to share my journey through social media, I received a lot of support. My family and friends also accompanied me at every chemo appointment. I never had to go through any of this alone.” -Tiffany Davis

She beat breast cancer and dared to breathe again. Then during a routine blood workup, her breast oncologist delivered a devastating blow - a leukemia diagnosis. On a January 2017 visit her labs were normal, but by June they were not. After repeated tests, a PET scan, blood work and finally a bone marrow biopsy, it was discovered that it was Acute Myeloid Leukemia (AML). This was July 31, 2017.

The AML was caused by the chemotherapy treatment she endured during her bout with breast cancer. It was something Davis had been concerned about since her first cancer diagnosis. When she beat cancer the first time Davis said she felt relieved, but was fearful of reoccurrence. “I tried to do holistic remedies to keep me as healthy as possible. I believe in doing modern medicine in combination with holistic remedies.”

Finding out later that she had leukemia she said, quite simply-- sucked. “I couldn’t believe that I would have to endure this for a second time.” She had witnessed other women who had had recurrences and hadn’t survived. It was terrifying to watch women so young die from this disease. “Even though mine wasn’t a reoccurrence, I knew what difficulties I may face. I had already gone through so much at a young age, but as I mentioned before I don’t back down easily.” Davis knew what had to be done and if chemo treatment was the plan of action, she was going to do it.

“In my heart, I know that everything will work itself out" - Tiffany Davis (Photo Courtesy, Tiffany Davis)

Davis has moments when she doesn’t know if she’s strong enough or has the patience to wait for good news. She gets tired and faces disappointment again and again, but there is no other option than to keep fighting, “In my heart, I know that everything will work itself out.” Sharing her story with others uplifts her and is a part of her healing. “There are so many people going through so many things in life. I’m just brave enough to share mine.” Having an amazing support system is key. My family and friends are the bomb if I may say so myself.”

If you ask Davis to describe herself, one word rings loud and clear - resilient. “Despite what I am going through I still push through adversity.” She has faith that this is just one chapter of her journey and does not define who she is as a person. “I continue to strive and go after the things I want. I’m a very hard worker and don't believe in handouts so I continue to push myself to be a better version of me.” Yet, strength to push through what Davis has lived through might seem impossible to others.

A bone marrow transplant from a genetically matched donor is Davis’ best shot at survival. What she needs now is a match, and finding one for her is no easy task. African Americans have a greater genetic diversity than other populations around the world, which makes finding the right match particularly difficult.

What makes the search even more of a challenge is the fact that so few members of the African American community sign up and register on the Be The Match registry. Because of that, African American patients have only a 23 percent chance of finding a matched donor, whereas the chance of a match for Caucasians is nearly three times that. The solution is singular and simple, more African Americans have to step up and join.

"African American patients have only a 23 percent chance of finding a matched donor, whereas the chance of a match for Caucasians is nearly three times that."

Raising awareness around this and other ways people can support those with cancer has become Davis’s mission. Cancer changed her, and she wants to change that the African American Community is under-represented in the life-saving registry. “Being able to help others, despite me fighting my own battles,” has been the most inspirational part of this otherwise harrowing journey.

Davis says it’s imperative that people sign up to be a part of the registry as an African American. “There is not much diversity within the registry so it makes it hard to find that perfect match or a match at all,” Davis explains. “Imagine all the people that I know that are not a part of the registry. You can potentially be a match. Be a match and save a life.”

She believes that lack of education about what being a donor means and how easily one can donate is the reason that more people don’t register. “Many people think that they have to go through this invasive process and that’s not the case.” A simple swab is all it takes. No cutting or needles is required.

People can register as marrow donors online on Tiffany’s behalf at: https://join.bethematch.org/tiffstrong

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Politics

Do 2020 Presidential Candidates Still Have Rules to Play By?

Not too many years ago, my advice to political candidates would have been pretty simple: "Don't do or say anything stupid." But the last few elections have rendered that advice outdated.


When Barack Obama referred to his grandmother as a "typical white woman" during the 2008 campaign, for example, many people thought it would cost him the election -- and once upon a time, it probably would have. But his supporters were focused on the values and positions he professed, and they weren't going to let one unwise comment distract them. Candidate Obama didn't even get much pushback for saying, "We're five days away from fundamentally transforming the United States of America." That statement should have given even his most ardent supporters pause, but it didn't. It was in line with everything Obama had previously said, and it was what his supporters wanted to hear.

2016: What rules?

Fast forward to 2016, and Donald Trump didn't just ignore traditional norms, he almost seemed to relish violating them. Who would have ever dreamed we'd elect a man who talked openly about grabbing women by the **** and who was constantly blasting out crazy-sounding Tweets? But Trump did get elected. Why? Some people believe it was because Americans finally felt like they had permission to show their bigotry. Others think Obama had pushed things so far to the left that right-wing voters were more interested in dragging public policy back toward the middle than in what Trump was Tweeting.

Another theory is that Trump's lewd, crude, and socially unacceptable behavior was deliberately designed to make Democrats feel comfortable campaigning on policies that were far further to the left than they ever would have attempted before. Why? Because they were sure America would never elect someone who acted like Trump. If that theory is right, and Democrats took the bait, Trump's "digital policies" served him well.

And although Trump's brash style drew the most handlines, he wasn't the only one who seemed to have forgotten the, "Don't do or say anything stupid," rule. Hillary Clinton also made news when she made a "basket of deplorables" comment at a private fundraiser, but it leaked out, and it dogged her for the rest of the election cycle.

And that's where we need to start our discussion. Now that all the old rules about candidate behavior have been blown away, do presidential candidates even need digital policies?

Yes, they do. More than ever, in my opinion. Let me tell you why.

Digital policies for 2020 and beyond

While the 2016 election tossed traditional rules about political campaigns to the trash heap, that doesn't mean you can do anything you want. Even if it's just for the sake of consistency, candidates need digital policies for their own campaigns, regardless of what anybody else is doing. Here are some important things to consider.

Align your digital policies with your campaign strategy

Aside from all the accompanying bells and whistles, why do you want to be president? What ideological beliefs are driving you? If you were to become president, what would you want your legacy to be? Once you've answered those questions honestly, you can develop your campaign strategy. Only then can you develop digital policies that are in alignment with the overall purpose -- the "Why?" -- of your campaign:

  • If part of your campaign strategy, for example, is to position yourself as someone who's above the fray of the nastiness of modern politics, then one of your digital policies should be that your campaign will never post or share anything that attacks another candidate on a personal level. Attacks will be targeted only at the policy level.
  • While it's not something I would recommend, if your campaign strategy is to depict the other side as "deplorables," then one of your digital policies should be to post and share every post, meme, image, etc. that supports your claim.
  • If a central piece of your platform is that detaining would-be refugees at the border is inhumane, then your digital policies should state that you will never say, post, or share anything that contradicts that belief, even if Trump plans to relocate some of them to your own city. Complaining that such a move would put too big a strain on local resources -- even if true -- would be making an argument for the other side. Don't do it.
  • Don't be too quick to share posts or Tweets from supporters. If it's a text post, read all of it to make sure there's not something in there that would reflect negatively on you. And examine images closely to make sure there's not a small detail that someone may notice.
  • Decide what your campaign's voice and tone will be. When you send out emails asking for donations, will you address the recipient as "friend" and stress the urgency of donating so you can continue to fight for them? Or will you personalize each email and use a more low-key, collaborative approach?

Those are just a few examples. The takeaway is that your online behavior should always support your campaign strategy. While you could probably get away with posting or sharing something that seems mean or "unpresidential," posting something that contradicts who you say you are could be deadly to your campaign. Trust me on this -- if there are inconsistencies, Twitter will find them and broadcast them to the world. And you'll have to waste valuable time, resources, and public trust to explain those inconsistencies away.

Remember that the most common-sense digital policies still apply

The 2016 election didn't abolish all of the rules. Some still apply and should definitely be included in your digital policies:

  1. Claim every domain you can think of that a supporter might type into a search engine. Jeb Bush not claiming www.jebbush.com (the official campaign domain was www.jeb2016.com) was a rookie mistake, and he deserved to have his supporters redirected to Trump's site.
  2. Choose your campaign's Twitter handle wisely. It should be obvious, not clever or cutesy. In addition, consider creating accounts with possible variations of the Twitter handle you chose so that no one else can use them.
  3. Give the same care to selecting hashtags. When considering a hashtag, conduct a search to understand its current use -- it might not be what you think! When making up new hashtags, try to avoid anything that could be hijacked for a different purpose -- one that might end up embarrassing you.
  4. Make sure that anyone authorized to Tweet, post, etc., on your behalf has a copy of your digital policies and understands the reasons behind them. (People are more likely to follow a rule if they understand why it's important.)
  5. Decide what you'll do if you make an online faux pas that starts a firestorm. What's your emergency plan?
  6. Consider sending an email to supporters who sign up on your website, thanking them for their support and suggesting ways (based on digital policies) they can help your messaging efforts. If you let them know how they can best help you, most should be happy to comply. It's a small ask that could prevent you from having to publicly disavow an ardent supporter.
  7. Make sure you're compliant with all applicable regulations: campaign finance, accessibility, privacy, etc. Adopt a double opt-in policy, so that users who sign up for your newsletter or email list through your website have to confirm by clicking on a link in an email. (And make sure your email template provides an easy way for people to unsubscribe.)
  8. Few people thought 2016 would end the way it did. And there's no way to predict quite yet what forces will shape the 2020 election. Careful tracking of your messaging (likes, shares, comments, etc.) will tell you if you're on track or if public opinion has shifted yet again. If so, your messaging needs to shift with it. Ideally, one person should be responsible for monitoring reaction to the campaign's messaging and for raising a red flag if reactions aren't what was expected.

Thankfully, the world hasn't completely lost its marbles

Whatever the outcome of the election may be, candidates now face a situation where long-standing rules of behavior no longer apply. You now have to make your own rules -- your own digital policies. You can't make assumptions about what the voting public will or won't accept. You can't assume that "They'll never vote for someone who acts like that"; neither can you assume, "Oh, I can get away with that, too." So do it right from the beginning. Because in this election, I predict that sound digital policies combined with authenticity will be your best friend.