Maria Williams Kennedy

Poster for upcoming Maria Williams Kennedy benefit night June 21.

Updated May 23

Maria was diagnosed with a progressive lymphoproliferative disorder, which involves a constellation of debilitating, life-altering symptoms including severe neuropathic pain. 

She is working with the Mayo Clinic to get chemotherapy treatment.

The longtime singer, singing instructor and coach is also is known by many who know and admire her as a mentor, confessor and trusted counselor -- someone who's often helped students who've fallen on hard times with no need or wish for fanfare.

Maria is married to Colin Kennedy and has a daughter, Maura (John) Ferguson and two grandchildren, Mairi and Jonas, with another grandchild due in July.

A night of benefit events is planned to help Maria with medical and general expenses on Wednesday, June 21, in Grand Forks. 

A freewill spaghetti dinner, along with a bake sale, in the basement of St. Mary's Catholic Church, from 5 to 7 p.m. that night, will be followed by performances from Bel Canto Studio alumni and area music educators at the Empire Arts Center, starting at 7:30 p.m. 

Tickets for the Empire music event are $20 for adults, $10 for youth in grades kindergarten through 12, and free for children 5 and younger. 

The spaghetti dinner will feature a meat sauce and a vegetarian sauce, garlic bread and vegetable trays, plus coffee and lemonade. The accompanying bake sale will feature a variety of baked goods, plus small dessert plates that will be for sale to accompany the dinner.

If you can't make either event on June 21, or if you'd like to help Maria sooner, you may donate immediately by clicking the "Donate Now" button found on this page and using PayPal or a credit card.

Or, you may send a check to NDAD, c/o Maria Williams Kennedy, 2660 S. Columbia Road, Grand Forks, N.D. 58201. Please make checks payable to NDAD and write "Maria Williams Kennedy" on your check's memo line.

This benefit is sponsored by NDAD as part of the charitable nonprofit's free Community Fundraisers Program. Learn more about it by calling (800) 532-NDAD, by visiting the Community Fundraisers page here on NDAD.org or by visiting one of NDAD's offices nearest you.

Follow this benefit on NDAD's Facebook and Twitter sites.

Information from Colin Kennedy, Maria's husband and primary caregiver:

Maria began experiencing tingling and numbness in her hands and feet about 2 1/2 years ago. Though she saw a doctor about it, the tingling and numbness developed into aches and then increasingly intense pain.

On top of the pain she's enduring, Maria has had trouble with her walking and balance, and her neurologist recommended she use a cane.

Maria has breathing issues -- alveolar hypoventilation -- that are exacerbated during sleep. She sometimes has fevers and awakes drenched in sweat.

She was referred in 2016 by her Altru Health physician in Grand Forks to Mayo Clinic, where she was diagnosed in June of last year with a progressive lymphoproliferative disorder, which several neurological and hematological tests confirmed. She consulted primarily with Dr. Anthony Windebank, a professor of neurology at Mayo.

Maria's specific condition is described technically as IgM monoclonal gammopathy of undetermined significance (IgM MGUS) with smoldering Waldenstrom macroglobulinemia (WM). Patients affected by MGUS often are asymptomatic, but IgM MGUS presents itself with symptoms outlined previously. The 'smoldering' element of WM means it has the propensity to develop further from Maria's initial diagnosis, so it could develop into rare cancer over time.

Following a battery of tests and examinations at Rochester, Maria received more recent word from Mayo Clinic that she does not have two of the conditions they were checking for: amyloidosis and POEMS Syndrome -- thankful news, since the prognoses for each is dire.

At the recommendation of her Mayo Clinic medical team, Maria started a 20-week course of intravenous immunoglobulin (IVIG) treatments. The hope was that the protein contained in the IVIG replaced the rogue protein in Maria's blood. During further analysis at Mayo in November 2016, the treatment had been ruled ineffective.

Dr. Windebank recommended treatment with rituximab. After Dr. Wilson Gonsalves, a Mayo hematologist working in concert with Dr. Windebank, wrote a case in support of treatment, Blue Cross Blue Shield of North Dakota reversed earlier rejections and approved coverage. Maria hopes to commence treatment by the end of June.

The Kennedys have spent at least six weeks so far at Mayo Clinic and traveling to and from, plus multiple additional appointments at Altru. Maria probably will require Mayo check-ups every six months, at minimum, for the remainder of her life.
  
 

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