Dungannon social to support Nephropathy Foundation

Preston and Cassy (middle) with two others who act as the four Canadian Ambassadors for IgAN Foundation.

The IgA Nephropathy (IgAN) Foundation’s mission is to be a patient-centric organization focused on finding a cure for IgA Nephropathy (IgAN).

The foundation is focused on funding research, using patient advocacy to empower patients.

On Saturday, March 29 Cassandra (Cassy) Rivett is hosting a Dungannon Social to support the IgAN Foundation.

IgAN is a rare, autoimmune disease that attacks the kidneys. It affects how blood is filtered in the small blood vessels of the kidneys.

IgAN occurs when an abnormal protein damages the filtering unit (glomerulus) inside the kidneys. It is estimated that 20-40 per cent of the people who have IgAN will develop end-stage kidney disease, which means they will need dialysis or kidney transplantation to survive.

IgAN occurs when abnormal antibody immunoglobulin A’s (IgA) are produced. The exact reason is unclear, but genetic factors likely play an important role.

The body produces other antibodies (IgG) to attack the IgA antibodies that it no longer recognizes as ‘self’.

As a result, the body’s immune system attacks the abnormal antibodies in the kidney and affects the kidney’s ability to filter the wastes from blood and ability to produce healthy urine.

According to the IgAN Foundation the first sign is often blood in the urine.

Currently, there is no cure for IgAN, and no treatments in Canada, but there are a few trials and drugs that are available in the United States.

Rivett, 31, grew up in Dungannon and currently works at the Goderich Salt Mine.

Rivett was diagnosed with end stage kidney failure at 28 with little to no symptoms. The disease Rivett suffers with is called IgA Nephropathy, also known as Bergers Disease, which is only confirmed through a kidney biopsy.

“Looking back, I did have headaches and some fatigue,” remembered Rivett.

“I was put on dialysis within three months after I found out I had kidney failure.”

Rivett was placed on dialysis for about one year and then received a transplant on June 1, 2022. Her neighbour and co-worker stepped up to be her living donor.

Currently, Rivett is living the post-transplant life and is back to a somewhat normal routine.

“I do have to be careful as I am still immunosuppressed and the IgAN can come back to my transplanted kidney,” admitted Rivett.

During the last few challenging years Rivett has received immense support from family, friends, and her workplace.

Now, that support system has grown to include her boyfriend Preston and the IgA Nephropathy Foundation.

To further the support and to raise awareness, Rivett is hosting an event in support of the IgA Nephropathy Foundation as she is now one of four Canadian Ambassadors from the Ambassador Program after training last year at the Austin Texas Spark Conference.

Rivett’s boyfriend Preston completed the ambassador training this year and is the only Canadian Ambassador focusing on the caregiver side of things.

As ambassadors they are to support, inspire, engage, and activate patients and caregivers.

“We are the boots on the ground to help advance the mission and raise critical awareness of IgA Nephropathy, push for better treatments, and reach patients and caregivers earlier in their journey,” explained Rivett.

“I hope to find someone with IgAN to empower them to take charge of their kidneys and overall healthy. Our goal as ambassadors is to connect patients with up-to-date information, disease management tools, and support to ensure nobody faces IgAN alone.”

Following her transplant in 2022, Rivett found the IgAN Foundation and went to her first patient conference in Washinton, D.C. in 2023. It was at this conference she felt she could finally understand the disease that had almost taken her life.

At the conference Rivett attended many breakout seminars on topics such as understanding blood work, post transplant question panels, and understanding your biopsy.

“These tools have helped me in my daily life and hopefully will help me further my transplant to last longer, and provide myself with more positive and healthy days,” Rivett said.

On the evening of the March 15 event, there will be live music by Dungannon local Zach Zell, a cash bar, prizes, dinner available, and trivia at 8 p.m.

There is no fee to enter or to have dinner. It is all by donation.

If any businesses are willing to supply food for the event, or door prizes and trivia prizes, Rivett would appreciate the support.

As IgAN Foundation is a foundation based in the United States, Rivett cannot issue tax receipts at this time.

Regardless of its American roots, IgAN Foundation is going global in Toronto, on May 14 and will continue to support Canadians with patient aid, support calls, and social worker access.

All proceeds of the event will go to IgAN Foundation.

For more information visit igan.org or contact Rivett at cassy@igan.org