Mackenzie was so young that Dr. Gertz was “hard-pressed to believe she actually had the disease,” he tells us.
“She’s the youngest patient I’ve ever seen.”
Please click HERE to read the full article from the Mayo Clinic’s In The Loop newsletter and interview with world-renoun amyloidosis specialist Dr. Morie A. Gertz.
Be The Match is a wonderful organization that helps match bone marrow donors with patients in desperate need of a life-saving bone marrow transplant. Check it out. You can help save a life.
Join the bone marrow registry today.
https://bethematch.org/support-the-cause/donate-bone-marrow/join-the-marrow-registry/
Dr. Guojun Bu, associate director of the Mayo Clinic Center for Regenerative Medicine, explains how new U.S. Food and Drug Administration approval clears the way for Mayo Clinic to accelerate production of stem cells for clinical trials.
We at Mackenzie’s Mission just received a HUGE shout out of support from Jill Johnson and the nursing students at Carl Sandburg College! They’ve joined the fight against Amyloidosis today on Rare Disease Day. Fight on and thank you for your support!
Around the world, activities are going on all month, culminating today, to raise awareness of the 7,000 rare diseases. Amyloidosis is one of those rare diseases. Together, great efforts are being made to take rare disease research to an international level. Only by doing so can we guarantee rare disease research will be truly effective. In turn, this will contribute to increased and faster diagnosis of rare diseases and therefore reduce the number of people around the world who face the daily challenge of living with an undiagnosed rare disease. Thank you for your support.
Amyloidosis knows no bounds. Tiny Archibald, former NBA star, sends a powerful message following his diagnosis.
Stay on top of your health, even if you feel good. You just never know.
For those sensitive to germs or have a weakened immune system, take note. The Cleveland Clinic has something to say you should hear about hand dryers.
https://health.clevelandclinic.org/the-dirty-truth-about-hand-dryers/
The National Organization for Rare Disorders (NORD) is a non-profit organization that works to advocate for and educate about the many rare diseases that most of the country knows nothing about. There are over 7,000 characterized rare diseases, and the number continues to grow. One in 10 Americans afflicted with a rare disease, and of those, 50 percent are in pediatrics. NORD works to raise awareness and support for the many members of our population who make up these numbers.
Last spring, a core group of 10 students came together to start RareNeu, Northeastern’s student chapter of NORD. This has become one of only four NORD student chapters in the country. One of the overall main goals is to raise awareness – and it’s not just about the disease, but to shed light on what patients and their caregivers go through. In addition, other goals will be to raise awareness about the policies regarding rare diseases, as well as to give students opportunities to become involved in any aspect of rare diseases. This could include internships at NORD, the chance to become published authors on rare diseases, and more.
Throughout the year, RareNeu is planning on holding philanthropic events, having letter-writing campaigns for local policy changes around rare diseases, and bringing in industry members, patients, caregivers, and head of patient organizations to educate their members and all of Northeastern about rare diseases. They hope their biggest event will be on Rare Disease Day, where they’ll bring Northeastern students to the Massachusetts State House to listen to patient speakers and industry representatives discuss policies with government officials.
NORD represents an opportunity for Northeastern students to learn about rare diseases, so that they can become effective patient advocates, researchers in the field, and help influence discussions in the public sphere. This is not at all limited to students interested in science or medicine – for example, the field can also benefit from those who are interested in public health or in business models around rare diseases. It’s an exciting initiative being launched here at Northeastern.
Using a cold cap can significantly reduce hair loss caused by chemotherapy. Although some minor side effects may occur, no serious side effects have been associated with cold caps. Learn more from Dr. Saranya Chumsri, oncologist.
I founded Mackenzie’s Mission on August 23rd, just four months ago. To recap, the mission of our charity is to make a difference in the fight against Amyloidosis. We seek to do this in two ways.
So, how did we do in 2017?
Raising Awareness
The feedback I have received from my outreach has been both touching and heartwarming. While being an inspiration to others is wonderful, I am most moved by the conversations I have had with others affected by this disease. We share a common bond with uncommon experiences. Knowing we are not alone in this fight gives us all strength.
Supporting Medical Research on Amyloidosis
Raising Awareness
Supporting Medical Research on Amyloidosis
I am encouraged by the impact Mackenzie’s Mission is already making. There is much work to be done, but with your help I know we can win this fight!
With warm regards,
Mackenzie
