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.

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Making a difference in the fight against Amyloidosis

Whew! It’s been a busy first year.

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.

• Raise awareness about Amyloidosis, leading to earlier diagnosis and better outcomes.
• Support medical research on Amyloidosis, seeking the cause of the disease and more effective treatments to improve and extend lives.

So, how did we do in 2017?

Raising Awareness

• Profiled my journey profiled in multiple media sources:
  • Amyloidosis Foundation and
  • Mayo Clinic’s “In The Loop” newsletter.
• Established my platform to share my story through:
  • periodic emails,
  • Facebook posts on news and education, and updates on my journey, and
  • videos on our YouTube channel.

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

• Became a registered 501(c)(3) public charity.
• Raised over $19,750, thanks to generous donors like YOU!
• Deposited 100% of these donations to the Mayo Clinic’s Amyloidosis Research Fund, thanks to a generous patron who is covering all of our operational expenses.

What are our goals for 2018?

Raising Awareness

• Continue to get my journey profiled in the media.
• Expand our outreach platform with our new blog and website; target launch in March.
• Pursue speaking opportunities, both large and small, spreading the word on the importance of early diagnosis.

Supporting Medical Research on Amyloidosis

• On August 6, 2018 we will sponsor our Play FORE The Cure charity golf tournament at the prestigious Robert Trent Jones Golf Club. We have posted the event on our Facebook page and if you follow us you’ll get the details as they become available. Please come join us!
• Target $50,000 in donations for the year. We hope we can count on your continued support!
• Pass on 100% of our donations to the Mayo Clinic’s Amyloidosis Research Fund.

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

The Amyloidosis Foundation profiles stories of patients and their Amyloidosis journey.

Here is Mackenzie’s profile 

Did you know Amyloidosis, a rare disease not known to many of us, is also found in our beloved pets? This disease is likely much more common than we know, just not well diagnosed.

Amyloidosis in dogs is a condition where proteins called “amyloid” are deposited in dogs’ organs and tissue, causing them to function abnormally. Amyloid is waxy and translucent in appearance and it cannot be dissolved or digested by the body. If the condition goes untreated for a long period of time, it could cause organ failure, especially in the liver and kidneys where the condition is most common in dogs. The symptoms of amyloidosis can vary depending on which organs are affected and the amount of amyloid deposited. Amyloidosis is an uncommon condition with several causes, though there is a known genetic predisposition among certain breeds. If you see the signs of amyloidosis in your dog, consult your veterinarian for a proper diagnosis and treatment.

Learn more about the symptoms, causes, and treatments.

Mackenzie’s Mission is focused on making a difference in the fight against Amyloidosis through raising awareness, promoting early detection, and supporting medical research.

We focus our fight in two ways

• Raise awareness about Amyloidosis and the importance of early detection, which often leads to better outcomes. Diagnosing this disease before organ involvement becomes life-threatening can greatly improve the chances of successful treatment.
• Support medical research on Amyloidosis, seeking the cause of the disease, better early detection methods, and more effective treatments to improve and extend lives. Importantly, the entirety of every donation goes towards research, maximizing donor impact and our ability to effect change. We have chosen the Mayo Clinic’s Amyloidosis Research Fund as the recipient of our donations, an organization respected and recognized globally as a Center of Excellence in Amyloidosis.

We implement our fight in many ways

• Raising awareness is a multi-faceted effort, including maintaining a digital voice through the web, our blog, social media, and newsletter; sharing Mackenzie’s experiences through the media and other organizations; speaking at events to audiences of all sizes and backgrounds, and creating videos by Mackenzie and others affected by Amyloidosis to share their experiences and educate the community at large.
• Fundraising is focused on a few key events throughout the year, such as our Play FORE The Cure charity golf tournament offering players the ultimate golfing experience, and Giving Tuesday which harnesses the generosity of people around the world embracing shared values and acting with purpose to bring about real change.