Posts May Contain Affiliate Links. See Disclosure. All opinions my own.

When Giving Forward Gets Personal

Mister and Sister have been taking swim lessons for a couple of years now.  It was at the pool that Mister met his friend Andrew.  They were on swim team together this last season.  Here’s Mister encouraging Andrew before a race…

Mister and Andrew at a swim meet

Andrew is a wonderfully gifted and talented boy that is battling Leukemia.  He is wise beyond his years, and he has endured A LOT over the past couple of years.  Over the summer, Mister participated in a Swimathon, in honor of his friend, to benefit the Friends of Kids with Cancer.  He’s had more visits to the hospital and cancer treatment center than any child should have to endure.

When someone in the family has cancer, it affects the entire family.  Andrew is one of six kids.  His siblings pretend play recently included using plastic wrap to “have a port” just like Andrew.

Andrew’s parents recently learned that a portion of Andrew’s cancer treatment medications, the antibody treatments which he’d already received, was denied coverage by their insurance coverage.  Medicine that had been covered by their previous carrier and that they thought was still covered.  The antibody treatment helps prevent serious infection in an immune system compromised by chemotherapy.  Needless to say, it is a treatment that he needed, and still needs.  That said, his parents have a $21,000 medical bill to pay, and do not have the means to pay it.

Giving forward is a way of life for my family. When giving forward gets personal, though, it takes on a whole new level of meaning. Which is why I’m bringing this to you. I’m asking you to consider donating to help Andrew’s parents pay for his cancer treatments. Today is the 15th. Can you give $15 to help pay for the cancer treatments that the insurance denied coverage for AFTER he received them?

 




Get Fundraising Ideas from GiveForward

 

I’m also asking you to consider sharing the Give Forward for Carrying the Shah’s campaign on your social media channels. You can learn more about Andrew’s journey on the Carrying the Shah’s Facebook Page and you can donate by clicking on the widget above or by visiting the Give Forward for Carrying the Shah’s campaign

After I tweeted about the campaign, GiveForward reached out to me and agreed to work with me to help raise the funds. Give Forward has agreed to contribute $25 per blog, up to $1,000, to write about the fundraiser, what the Shah’s are going through, and talk about helping in times of need.

They’ve agreed to give an additional $200 if I can get 30 bloggers to post by the 24th of November.

You can learn more, and report your links, at

http://thatbaldchick.com/about-me/tbc-giveforward-for-andrew/

I am willing to give any blogger that posts about this campaign a 150×150 button ad in my sidebar for one month. To get the sidebar ad, simply select the Trading Spaces option on my ad page or at at:
https://app.passionfruitads.com/marketplace/site/that-bald-chick after submitting your post link, and I’ll approve it.

 

Posts may contain affiliate links. See Disclosure. All Opinions are My Own
Posts May Contain Affiliate Links. See Disclosure. All opinions my own.

We Can’t Smile Without You @gofundme

When my sister, Denyse, and I were younger, we had smiley face tee shirts that said “We Can’t Smile Without You.” At the time, it was the slogan for the National Foundation for Ectodermal Dysplasia (NFED) which is an organization near and dear to our heart. Denyse and I are both affected by Hay Wells Syndrome, which is one of the Ectodermal Dyplasias. Saying Ectodermal Dysplasia is kind of like saying soup. There are quite a few varieties. The syndrome we are affected by affects hair, skin, teeth, nails, and sweat glands, among other things. Denyse started wearing dentures at the ripe old age of 6 or 7, and I got my first set of chompers by the time I was 8. Smiling is a big deal for us. Denyse later received mandibular dental implants, at age 16, through the National Institutes of Health, through a research program designed to see how dental implants are tolerated by patients affected by Ectodermal Dysplasia. That was 20 years ago. (shhh… don’t tell anyone I just told you how old she is)

Here’s Sis and I together…

When we were growing up, we never imagined that one day the slogan “We Can’t Smile Without You” would become so personal! Meet Dyllan, Danielle, and Delores.

We Can't Smile Without You

Dyllan, Danielle, and Delores are Denyse’s kids. All three are affected by the same syndrome that Denyse and I are affected by. All three need dental implants. They’ve been on a waiting list for the dental implant program at the SIU School of Dental Medicine for over five years. They’ve finally been approved and are ready to start work on their new smiles. Trouble is, their dental care is not covered by insurance. Letters of medical necessity have been written to no avail. Even with the 20% discount that the dental college can offer because of a relationship with the NFED, their care is expected to reach $60,000.

Dyllan, who is the oldest, has had impressions to start conventional dentures for him, that he’ll wear until the implant process is completed. The dental school won’t even order the teeth to go in the denture until my sister can pay $1272. Dyllan has said he wants his smile in time for Prom. He asked a girl to Prom, and she said Yes! Of course, he’ll wear a tux for Prom, and he told his Mom that NOTHING will go better with his Tux than his New Pearly Whites! Oh, my!

Denyse is legally disabled. She doesn’t have an extra $1272, let alone an extra $60K!

She’s started a GoFundMe for Smiles campaign, in hopes of raising the funds to get them the smiles they so deserve.

Would you consider giving to help them smile? Would you consider sharing their GoFundMe on your social media sites? I would greatly appreciate it.

You can donate using the widget above or by visiting the GoFundMe for Smiles page.

If you’re a blogger, check out how you can help even more by visiting my TBC GO Fund Me for Smiles page.

Posts may contain affiliate links. See Disclosure. All Opinions are My Own
Posts May Contain Affiliate Links. See Disclosure. All opinions my own.

Brawny® Renews Partnership with the Wounded Warrior Project® #ToughIs

Being tough means continuing when it would be easy to stop.  When you grow up being different, you learn early on that you can either be tough or you can let life knock you down.   Thanks to my amazing family, I chose the former.  Because I know how easy it would be to give up, I’ve always admired those who don’t.  Like our wounded soldiers.   Which is why I am thrilled to partner with Brawny® to announce that they have renewed their partnership with the Wounded Warrior Project® for the third year running!  To date, the Brawny® brand has donated over $1.9 million to the Wounded Warrior Project®.  Brawny® says that the Wounded Warrior Project® shares the same spirit and values as it does: an inner strength that emboldens and inspires people to be “Tough to the Core.”

Tough Means Continuing When It Would Be Easy to Stop

I love companies that give back, especially one’s that give back to our soldiers!

Brawny Logo WWP Logo

The Wounded Warrior Project® (WWP).  WWP (founded in 2003) helps wounded servicemen and women adjust to civilian life and persevere through the visible and invisible wounds of war.  The fact is, tough is so much more than physical strength. Being tough, for some, is about learning to put one foot in front of the other again.  For others, it’s about getting back up when life has knocked you down.  For many of our soldiers, it’s about learning to work through the invisible wounds they sustained on the battlefield.

My Dad served three tours in Vietnam, aboard the USS Hooper DE-1026 from 1965 to 1968.  He doesn’t talk much about his time in the Navy.   Back then, a lot soldiers returning from war didn’t talk about their experiences.   Instead, they stuffed it.  Their inability to deal with their invisible wounds would inevitably creep into other areas of their lives.  My Dad is a recovered alcoholic, and has been for years.  While he’s never actually said it, I’ve no doubt that the invisible wounds of war helped drive him toward the bottle.  Perhaps if WWP had been around back then, many of our soldiers could have avoided years of living with festering wounds.
Our soldiers are amazing heroes, and when they come back from war, some of them need a bit of help.  After all they’ve done for us, I think we owe it to them to give them the help they need.  How can you help, you ask?
Simply tell us what “tough” means to you and the Brawny® brand will donate $1 to WWP for every text or photo submission, and for $5 for every video (up to $350,000).  You can share your definition and donate using #ToughIs on Facebook, Instagram or visit www.brawny.com/wounded-warrior-projectYou can connect with  @Brawny on Twitter and Brawny® on Facebook and BrawnyBrand on Instagram and you can connect with @wwpinc on Twitter and Wounded Warrior Project® on Facebook.Learn more about Brawny®’s partnership with Wounded Warrior Project® by visiting www.brawny.com/wounded-warrior-project .  To learn more about the Wounded Warrior Project®, and check out some awesome volunteer opportunities, visit www.woundedwarriorproject.com.

Disclosure: This is a compensated campaign that I am participating in with Brawny. All opinions are my own and do not reflect those of the brand.

 

Posts may contain affiliate links. See Disclosure. All Opinions are My Own
Posts May Contain Affiliate Links. See Disclosure. All opinions my own.

Run 2 Sweat Virtual Run @NFED_ORG #Run2Sweat

As many of you know, I recently started training for a 10K (which is 11/8) and a 15K (which is 12/14). You may also know that my son and I are not affected by the Hay Wells Syndrome of Ectodermal Dysplasia, which affects our ability to sweat properly.

Yesterday I registered my family if five to participate in the Huxman Run 2 Sweat Virtual Run, which benefits the National Foundation for Ectodermal Dysplasia (NFED). The NFED is near and dear to my heart. They have been a source of information, support, and comfort for as long as I can remember.

I ran my 5K this morning.

image

Training to run a 10K and a 15K when you don’t sweat properly can be challenging, to say the least.  But, it’s not impossible.  And if I can run 5K, I would think many others could, too!

You can run to support the NFED, as well. Registration is easy, and since its a virtual run, you can run (or walk) wherever and whenever you want. You also get a cool technical shirt when you register.

Register for the Huxman Run 2 Sweat Virtual 5K

Not interested in running (or walking) 5K?  They have a 1 mile option, as well. Or, you can support my family as we complete ours!

image

Donate to support my family in the Run 2 Sweat Virtual Run.

What do you say?  Can you spare $5 to support us?

Posts may contain affiliate links. See Disclosure. All Opinions are My Own
Posts May Contain Affiliate Links. See Disclosure. All opinions my own.

Cyber Bullying is Just Wrong #HugDontJudge #BeautyIsDiverse

I grew up being made fun of for my unique appearance. I am affected by ectodermal dysplasia, and as a result am uniquely beautiful. My Mom and Dad, who are awesome by the way, always taught me that people make fun when they don’t understand and that if you make them understand, they won’t make fun. shaq instagram screenshotNow is just one of those times when the opportunity presents to educate someone about ectodermal dysplasia and to reinforce the truth that beauty is, in fact, diverse.

Jahmel Binion is Michigan man, also affected by ectodermal dysplasia. Jahmel, too, has been teased all of his life because of his unique appearance. Jahmel recently posted a selfie on Instagram, and soon found himself as the brunt of the joke again. Only this time, it was by none other than Shaquille O’Neal, who posted a split photo of himself next to Jahmel, making fun of Jahmel’s appearance. The photo has been removed from Shaq’s account. Trey Burke and Wacha Flocka Flame are said to have joined in the teasing.

Rather than hang his head in shame, though, Jahmel was inspired to create a “Hug Don’t Judge” campaign against bullying!

I have to applaud Jahmel for keeping his response positive. It takes strength of character to do that. I bet he has awesome parents, too. ;)

I wanted to share with you the interview Jahmel had with Fox news, so you can see him yourself.

Fox 2 News Headlines

The National Foundation for Ectodermal Dysplasia has extended an open invitation to Mr. Shaquille O’Neal to attend the annual family conference in Columbus, Ohio, so that he can learn about ectodermal dysplasia and meet the people it affects. I hope you’ll lend your support and share the invitation via your social media channels.

I would be remiss not to share a video that the National Foundation for Ectodermal Dysplasia put together that tells more of our collective story.

Please know that my aim in sharing this is not to shame Mr. O’Neal, though his actions were unkind in the very least. Instead, it is my hope– and the hope of the community of men, women, and children that are affected by ectodermal dysplasia, that Mr. O’Neal will learn from his actions and join our efforts to fight cyber bullying. After all, beauty is diverse.

Will you help us spread the message by sharing this post or by tweeting this message “@Shaq Beauty is diverse. Let us show you. #HugDontJudge #NFED @nfed_org

Thanks!

NFED #HugDontJudge

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Posts may contain affiliate links. See Disclosure. All Opinions are My Own