Ok peeps - I dont ask for much but today you are going to see a lot of status updates from me. One will honor Isabelles 7th birthday (can you imagine, shes SEVEN today?!?) and the rest will ask for some help. You see, my dear friend Katie is an amazing person. In her 20s she met the love of her life, Mike, and had such a happy life. After being married for about 5 years they had the most amazing boy, Noah. In 2009, at the age of 29, while Noah was just 10 months old, Mike was given the terminal diagnosis of Frontotemporal Degeneration, or FTD, after 8 misdiagnoses. 4 days after Mikes diagnosis, Katies mom had a sudden massive heart attack and died, 17 days after that her father was diagnosed with early onset Alzheimers. Mike sadly passed away when Noah was 4 years old. It was heartbreaking to watch and heartbreaking to know one of Isabelles best friends would never know his Daddy for the man that he once was. I dont tell you this to make you feel bad. I tell you this so you understand how strong and resilient Katie is. This series of events caused Katie to leave her job, lose her home and take on the role of caregiver to Noah and her Dad and Mikes advocate. Now she has dedicated herself to taking the power back from FTD and rare diseases. She has spoken at conferences, colleges, hospitals, the MA state house and Capital Hill. But, it is not enough. 1 in 10 Americans are affected by a rare disease. More people need to hear about the experiences of caregivers. More people need to know how they can support their loved ones, friends, neighbors, and colleagues who are struggling with rare disease. So she needs your help. Katie is campaigning to appear on the Ellen show in Febuaray 2015 for Rare Disease Day. Please send Ellen a letter or online submission on Katies behalf. You can do so here:katiebrandt.org/ellenonline/. I will continue to post about this throughout the day and for the next few weeks. Today is my day to help spread the word, I thought it was a great way to honor Isabelles birthday. Please help. Please SHARE this status - the more submissions the better. We all had a blast pouring ice over our heads to spread awareness. Just fill out the form and hit SHARE. This could be you, this could be me. Is it our loved ones and friends. Love Is Out There #EllenandKatieRDD2015 Learn more at katiebrandt.org
Posted on: Thu, 18 Sep 2014 10:35:08 +0000
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