LLS Supports Local Families Affected by Blood Cancers

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Did you know that every three minutes, someone in the U.S. is diagnosed with a blood cancer? September is blood cancer awareness month, during which the Leukemia and Lymphoma Society – Nebraska Chapter (LLS), one of Community Health Charities of Nebraska’s (CHC-NE) 22 member charities, raises awareness of the disease for the people that are affected by blood cancer, people like 3-year-old Gavin Norton and his family.

“On the night of Feb. 16, 2015, our 7-month-old son Gavin was not eating, and he became so lethargic he went limp. He turned as pale as a ghost,” Gavin’s mom, Tiffany Norton, said. “We ran him to the ER at Children's Hospital. Within three hours he was admitted up to the floor, where a doctor came in and told us that they believe he has leukemia.”

The doctor found that Gavin had multiple abnormalities on his lab work. His hemoglobin was around 2, when it should be 12. They started a blood transfusion, and over the next two days, Gavin would get four. Gavin also had surgery to place a central line where he could receive medicines, like chemotherapy, and get blood drawn. During the same surgery, the oncologist did a bone marrow biopsy that proved he had a type of leukemia known as AML, or acute myeloid leukemia.

“I was terribly shocked when Tiffany called and told me they had been at Children’s and that Gavin had been diagnosed with leukemia,” said Diana McDonald, Gavin’s grandma, of Grand Island.

Two days later, he started his first of six rounds of chemotherapy, Tiffany said. “Each round would last about a week and every month he would start a new round. His immune system would decrease to nothing each time and the fear of infection put us in a reclusive state. We adjusted to a new home in the hospital and became very close with all the wonderful doctors and nurses who took care of Gavin.”

Diana was able to cut back on her work schedule and drive from Grand Island to Omaha every Thursday to help relieve Tiffany and Nick, who stayed at the hospital with Gavin during the week. “They didn’t want to leave Gavin alone and because of his treatment, he couldn’t leave the hospital because of his immune system. So I could help with Gavin for the kids’ sake to give them some normalcy,” Diana said.

The next 10 months were the hardest our family has ever been through, Tiffany said. “We spent close to 200 days and nights in the hospital over those 10 months. But we were strong and did not back down. Our son is the strongest person I know and fought every day for life. Every year we celebrate the strength and courage he has shown.”

Although the survival rate for AML is only 50%, Gavin was one of the blessed ones that made it through the treatment. “With a survival rate of only 50%, the Leukemia & Lymphoma Society invests so much money in the way to find a cure so that one day the survival rate will be 100%, so that all kids with AML will make it through and grow up,” Tiffany said.

The family is involved in the LLS Light the Night Walk, which this year will be held on Oct. 21, 2017, at Stinson Park at Aksarben Village in Omaha. “Once it hits your home, you are more willing to donate and see the good the research does,” Diana said. “You don’t realize how important those dollars and organizations are until you have that knowledge and realize how much they do help.”

Community Health Charities of Nebraska Celebrates 2016-2017 Annual Meeting

Community Health Charities of Nebraska celebrated its annual meeting on Aug. 24, 2017, at Champions Run, sponsored by Children’s Hospital and Medical Center. Erik and Heather Younger, Ambassadors for both the March of Dimes, Nebraska & Western Iowa Market and the Nebraska Community Blood Bank, shared their family’s story as the keynote speaker. CHC-NE also announced campaign results for the 2016-2017 year, raising $1,896,822.

Medical Research Update: CRISPR

CRISPR (Clustered Regularly Interspaced Short Palindromic Repeat) has the potential to end life-threatening diseases like cystic fibrosis, breast and ovarian cancer and inherited Alzheimer’s Disease. But there’s a catch: This same technology could be used to create "designer babies," which is why gene editing is the subject of ethical conversations as well as scientific ones.

Stories of Caring: Cory's Story

Cory Frish’s eyes light up when he talks about Nebraska football. His home is decorated with Huskers décor, with a Huskers windmill out front, and he proudly wears a Huskers sweatshirt. He says that he is an easy person to buy gifts for because he enjoys most things that demonstrate this Huskers spirit. His loyalty to the Nebraska team means more to him than football. It’s about what it means to feel a part of the community rather than out there all alone.

Q&A: Brain Injury Alliance of Nebraska's Concussion Discussions

According to a 2015 Harris poll, 90 percent of Americans cannot correctly define a concussion, and most did not know the symptoms of a concussion. “Statistics like that are putting our children at risk as they return to the field and the classroom,” said Dr. Kody Moffatt, pediatrician and sports medicine specialist, Children’s Hospital & Medical Center, Omaha.

To help educate people about concussion symptoms, the long-term effects of concussions and the resources available through Brain Injury Alliance of Nebraska, the organization started hosting “Concussion Discussions” across the state. We sat down with Cathy A. Wyatt, Community Outreach Director at Brain Injury Alliance of Nebraska, to learn more about these concussion discussions and how donor dollars to CHC-NE are used by Brain Injury Alliance of Nebraska.

Autism Action Partnership's Circle of Friends Program Promotes Inclusiveness

Autism Action Partnership (AAP) hosts its “Circle of Friends” project in 25 schools across Nebraska.   This program pairs students with autism with neurotypical children and, together, they plan activities and events to promote inclusiveness in their schools. Here’s a note from the Circle of Friends counselor in Norris.

Three Member Charities Receive Grants from Curt Gordon Memorial CHC-NE Foundation

Community Health Charities of Nebraska (CHC-NE) is proud to announce that three of its 22 member charities received the inaugural grants from the Curt Gordon Memorial CHC-NE Foundation. These funds were awarded above and beyond the quarterly distributions that these charities are receiving from CHC-NE, which are provided by donors through the annual statewide campaign.

Medical Research Update: NIH Funding

One of the priorities of the new Administration in Washington, D.C., has been cutting budgets, including the largest funder of health disease research in the world, the National Institutes of Health (NIH). The Trump Administration proposed cutting the NIH budget by about $1 billion in 2017. Instead, Congress passed (and the President signed May 5) a $2 billion increase in NIH funding for 2017. But the new “skinny budget” proposal for 2018 would make the earlier proposed cut even more drastic, reducing the current NIH budget by $5.8 billion.

CHC-NE Announces West Central Campaign Chair

Community Health Charities of Nebraska (CHC-NE) has announced the 2017-2018 Partnership Campaign for Health Chair for the West Central Nebraska region. Roxann Holliday, Hastings College, will lead efforts to achieve this year’s regional goal of raising $165,000 for 22 health charities through the donor-focused nonprofit organization, said Kari Hooker-Leep, CHC-NE Regional Director.

Support Groups Helping People with Chronic Illness Statewide

Support Groups Helping People with Chronic Illness Statewide

For many, the diagnosis of a chronic illness can be isolating, even with support from family and friends. Some people still feel that no one can relate to what they are going through unless they have experienced the same diagnosis. In their desperation, there is somewhere they can turn to for this kind of support. The funds for this support comes from donor contributions given to Community Health Charities of Nebraska during annual workplace campaigns. Our member charities can connect people with support groups where they can learn more about their diagnosis and talk to others who are experiencing similar problems.  

Arthritis Foundation Hosting Nebraska Walk to Cure Arthritis on May 13


Arthritis Foundation Nebraska, one of CHC-NE's 22 member charities, is hosting its annual Walk to Cure Arthritis on Saturday, May 13, 2017. The event will be at the Pavilion at Mahoney State Park starting at 8:30.

Last year's record-breaking crowd of 340 participants and 50 volunteers meant that the event has outgrown Schramm Park, which is why the event was moved to Mahoney State Park. The event honorees this year are:

  •  Kathryn Wildy, MD., from Rheumatology Consultants, Medical Honoree
  • Cathy Pietrick from Omaha, Adult Honoree
  • Alexis Bach from Emerson, NE, Youth Honoree. 

Schneider Electric/DTN/The Progressive Farmer is the presenting sponsor. Other sponsors are Home Instead Senior Care, Westroads Rheumatology, Ortho West/Rheumatology Consultants, Fremont Health, Rheumatology and Osteoporosis Service from Lincoln, Lincoln Federal Savings, GIKK Ortho Specialists, CHIHealth Orthopedics and Sandhills Publishing.

If you would like to participate, go to www.walktocurearthritis.org/nebraska. Money raised will go towards research to find a cure, JA activities and events and community resources.

United Cerebral Palsy of Nebraska Raising Awareness by Wearing Green

Everyone knows to wear green on St. Patrick’s Day, but those affected by cerebral palsy will also be wearing green and raising awareness on March 25 for Cerebral Palsy Awareness Day.  

Cerebral palsy is a non-progressive disorder of the motor control areas of the developing brain. It is caused by damage to one or more specific areas of the brain. About 764,000 children and adults currently have cerebral palsy, and about 10,000 babies born each year will develop cerebral palsy.

MDA’s Shamrocks Helping Local Nebraska Families for 35 Years

When Ruth and Kody McCain’s first son was about 18 months old, he was diagnosed with Partial Merosin Congenital Muscular Dystrophy, a genetic condition where both parents are carriers but do not generally have symptoms of the disease. With this diagnosis, the couple learned that there was a 1 in 4 chance that their other children would have it.

Medical Research Update: MDA's Spinraza

Medical Research Update: MDA's Spinraza

During the last week of December 2016, the FDA formally approved a new drug from Biogen called Spinraza (nusinersen) for the treatment of spinal muscular atrophy (SMA.) Just five years ago, there were no approved therapies to treat the underlying cause of SMA. MDA has funded foundational work in SMA and invested nearly $750,000 in awards for early-stage development of nusinersen. Since its inception, MDA has invested more than $45 million in SMA research. This breakthrough will help Nebraskans like Ollie and is only possible because of your gifts.