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Category: amyloidosis awareness

Mackenzie’s Mission: The Voices of Amyloidosis

Mackenzie’s Mission: The Voices of Amyloidosis

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Mackenzie was diagnosed with Amyloidosis when she was only 23 years old. After receiving an autologous stem cell transplant at the Mayo Clinic in Rochester, MN she is now in complete remission! Mackenzie’s Mission was founded to help spread awareness of this disease and to raise funds for research. In 2018, the first ever Play FORE the Cure golf tournament, plus donations throughout the year, raised over $164,000! Through their website,  Facebook page, and YouTube channel, Mackenzie’s Mission continues to create…

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Faces of Amyloidosis

Faces of Amyloidosis

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Thank you so much to Mackenzie’s Mission for putting together this Faces of Amyloidosis video and for including me in it. Spreading awareness of this rare disease is crucial. It leads to earlier diagnosis which leads to saving lives. Once thought to be the disease of elderly men, a diagnosis of Amyloidosis is becoming more prevalent in younger men and women. Doctors need to recognize this and test if symptoms are present even if the patient does not fit the…

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Let’s Chat!

Let’s Chat!

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Over the past few weeks I have had people reach out to me who have either just received a diagnosis of Amyloidosis, or who are in the process of being tested. Each of these people has expressed that they hesitated to contact me. Please don’t hesitate to contact me! My main reason for starting this blog and sharing my story was to help others like me. People who were sick and scared and searching for answers. Navigating a rare disease…

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The end of NEOD001

The end of NEOD001

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I must say I was completely shocked when I heard of the end of the trial for NEO. Others I have talked to (people definitely more knowledgeable than I in the field of amyloids) had a feeling it was coming. I was convinced that this antibody was going to do wonders for the field of AL Amyloidosis. I was convinced that it was doing wonders for me! (I feel like maybe it did still help me even if they didn’t…

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