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As a Mom, and as a volunteer who has worked with the bravest of cancer survivors and other people in need, my heart truly goes out to families wading the difficult waters of chronic illness. I feel like I can hardly imagine, yet I can imagine all too well the depths of suffering the whole family endures when a precious child is sick and you would give anything for them to be well again.
The unique trials of my own life have taught me to live with intention and purpose, never taking for granted the health that my family and I have been blessed with. My eyes have been opened to recognize just how fortunate we are when I look around at all the families dealing with long term struggles like chronic illness.
I know you feel the same, as the community here is one of the most caring and compassionate I’ve ever seen, and that’s why I’d like to share with you about a group of brave little fighters who often go unrecognized and even unheard of – children with Neurofibromatosis.
May is NF Awareness Month, a time to connect, understand, and educate about NF. Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. NF affects one in 3,000 people of all populations; there is no effective treatment or cure. NF is worldwide in distribution, affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.
The Children’s Tumor Foundation is committed to finding effective treatments for the millions of people living worldwide with NF. Neurofibromatosis manifests itself in a number of ways and there are a number of ways to fight NF! The “I Know a Fighter” campaign is an opportunity to recognize the many ways the community pushes back against neurofibromatosis – the scientists researching treatments and a cure; the volunteers driving awareness in the community; the donors raising money to fund research; and the family supporting one another at every doctor appointment and test.
Everyone struggles with something in life, and we can can all appreciate the strength and perseverance it takes to overcome obstacles and live a full life. There are lots of ways to fight NF: we can walk or race for a cure, volunteer and lobby for research, share to spread awareness, and more! This is why I am sharing with you today and I hope you will connect with The Children’s Tumor Foundation on social media to stay informed about how you can help too!
Keep up with them here:
You can learn even more right here! Who do you know fighting chronic illness? Or if that is your own family, what have you found are the most helpful ways others can support you?
Our mission is to provide a consistent gathering place for like-minded women to build online connections, share inspiration, and provide mutual encouragement and accountability as we seek to live intentionally and make a difference in the lives of those around us.
Every Monday we will invite bloggers to link up any blog post that encourages women to live life on purpose. This could include testimonies or goals from your own life, small acts of kindness or service, creative tips or ideas for showing consideration to others — the possibilities are endless. Our objective is to use our God-given time and resources to His glory!
Also, just a heads-up: we have created two fun new ways to keep us all connected! Now we have our own Facebook community group to stay in touch beyond the blog posts AND we also have a new #MADMlinkup group Pinterest board and we will be pinning our favorite posts from the linkup that inspire and encourage us to make a difference. We are so grateful for you and would love for all of you to join us for fellowship in the above linked community group and you can follow the Pinterest board right here to watch for your posts:
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Thanks for raising the awareness, and using these beautiful and colorful photos at that. 🙂
Thank you for your kind comment Lux!
Thank you so much for this informative post about NF…I signed up with all three social media sites…many blessings to you 🙂
Awesome! Thank you Beth!
Thank you for sharing this information and raising awareness of NF. Thanks, too, for sharing this space for us to link to. Blessings on you!
So sweet, thank you Pamela!
Thank you for the link-up. I’m looking forward to being inspired. 🙂
Great to hear, thank you!
I really appreciated this blog. It provided information I didn’t know, and I pinned it. Thank you for raising awareness for a struggling group of fighters! Blessings from “Espressos of Faith”! LOVE this blog site!
What a sweetheart you are, thanks so much for letting us know you are helping to spread the word about this important cause!
Thank you for this post. I’ve heard of this disease before, and its effects can be debilitating and devastating. Awareness is half the battle. And I believe that God calls us to do what we can to help children around the world who suffer.
This is a very good cause. Spreading word about such a disease is important to get much needed funds, awareness and above all an understanding and a genuine empathy that goes a long way in supporting the cause.