Emily Progin, PR and Communications Coordinator
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MAY 20 FUNDRAISER: GIVE HOPE TO WOMAN WITH RARER MS DIAGNOSIS
Kelly Kinney Is Fundraising for Cutting-Edge Treatment Not Covered by Insurance
OSHKOSH, Wis.— On Saturday, May 20, the community will rally around a critical cause as they help Strike Out Kelly’s MS at Rev’s Bowl Bar & Grill in Oshkosh. Enjoy bowling and DJ Bingo with prizes, a silent auction, a booze raffle, and more—all funds raised benefit the national nonprofit Help Hope Live in honor of Kelly Kinney, an Oshkosh resident fundraising for a stem cell transplant.
When: Saturday, May 20 from 3 p.m. to 7 p.m.
Where: Rev’s Bowl Bar & Grill (275 N. Washburn, Oshkosh, WI, 54904)
What: Bowling and DJ Bingo with prizes, silent auction, booze raffle, and more.
Cost: Free to attend! Enjoy three games of bowling, shoe rental, and pizza for $20.
Buy tickets: In-person
Donate: Can’t make it, but want to help? Donate at https://helphopelive.org/campaign/21508/
48-year-old Kelly Kinney has lived in the Fox Valley area for over 30 years. Kelly’s parents live in Winneconne, where she graduated. Kelly was a first responder in the Winneconne/Poygan fire district before she moved. Prior to her hospitalization in 2018, Kelly was an assembler at Oshkosh Defense for 11 years.
Kelly was diagnosed with transverse myelitis, a rarer demyelinating disorder in the multiple sclerosis (MS) family. Transverse myelitis causes damage to the spinal cord, affecting both sides of the body, and it can cause permanent paralysis.
Doctors initially thought Kelly’s symptoms represented a one-time medical issue that would not recur. Over time, her medical team realized her diagnosis included progressive multiple sclerosis, and Kelly started a course of immunosuppressant medications. Her diagnoses cause her immune system to erroneously target the body’s protective nerve coatings, or myelin.
Each time she experiences a flare, Kelly’s spinal cord sustains damage that can lead to permanent paralysis.
Kelly regularly experiences numbness, weakness, and delayed responses in her limbs. Her legs are weak and heavy, and the bottoms of her feet are numb, making it difficult to maintain balance and control while walking. She frequently relies on mobility aids such as a cane to help her balance and walk. Most activities lead to extreme fatigue—“I have to plan my days around my energy level,” she explained.
Kelly’s symptoms can change day to day and even moment to moment. In one case, Kelly’s body became overheated, and she temporarily lost all function in both of her arms. “Most of my social life has become medical appointments,” explained Kelly.
Kelly can never be certain when symptoms will strike or how they will impact her. Any new damage related to her diagnosis could potentially cause new and more permanent disabilities and even paralysis.
Her goal is simple: to find a treatment pathway that will allow her to minimize the damage of this diagnosis and prevent permanent paralysis.
A hematopoietic stem cell transplant (or HSCT) is a 28-day treatment option that involves removing a patient’s own stem cells from their bone marrow, four days of chemotherapy to eliminate the patient’s immune system, and reintroducing those stem cells to rebuild the immune system over six to 12 months.
Currently, only a very small group of MS patients qualify for HSCT clinical trials in the U.S. Kelly has been eliminated from the running for these trials, in part because her MS is considered not a textbook case. “When it comes to existing MS treatment options, I’m a square peg in a round hole,” explained Kelly. “HSCT is by far my best next step.”
While there are multiple reputable HSCT providers that patients can pursue on their own, most are not covered by insurance. In Kelly’s case, pursuing HSCT will cost $60,000 out-of-pocket to cover medical travel, treatment, and recovery time.
That’s why her community has turned to the trusted medical fundraising nonprofit Help Hope Live. Donations can be made at: https://helphopelive.org/campaign/21508/
Kelly is meeting her community’s support and generosity with devotion of her own. She has lost weight, started eating healthier, and exercised regularly for the past year to help prepare her body for HSCT treatment. In the process, she says she’s gained confidence, encouragement, and mental strength. “The kindness of strangers is changing my life,” she said.
Unlike a GoFundMe fundraiser, donations to Help Hope Live are tax deductible to the extent allowed by law, and all funds raised will be managed by the nonprofit to cover verified medical and related expenses. Help Hope Live verifies medical and financial need for every patient.
Help Hope Live is a national nonprofit that specializes in engaging communities in secure, tax-deductible fundraising campaigns for people who need a transplant or are affected by a catastrophic injury or illness. Since 1983, campaigns organized by Help Hope Live have raised over $172 million to pay patient expenses. ###Written by Emily Progin