MMI Monthly 

The electronic newsletter of the Munroe-Meyer Institute at the University of Nebraska Medical Center

Nov. 8, 2017
Discomfort with "disability"
                            
Words can be limiting and hurtful.
 
This is especially true of many of the words that have been used to describe individuals with intellectual and developmental disabilities. Historically, they were not only offensive, but also conveyed the negative attitude of the society toward a group of our fellow human beings.
 
While "intellectual and developmental disabilities" is certainly a better, almost universally accepted term, it is still a label that I am not very fond of. The word DISABILITY means "not able," and I take an issue with this. It implies somehow less worthy, and this is simply wrong. Disabled in what? In loving? In honesty? In caring? We are all disabled in something, and exceptional in other things, yet most of us do not have to carry our "dis-" label. The phrase "atypically developing individuals" is somewhat better, as all of us are atypical in some domain of our daily lives, but it still fails to describe our caring.
 
I wish I had -- but I do not -- a solution for this linguistic and labeling challenge that we face every day.
 
However, knowing that human existence encompasses the whole spectrum of skills, behaviors and appearances, I fully endorse a term "neurodiversity," which unites all of us. 

Karoly Mirnics, M.D., Ph.D.
Director
The Munroe-Meyer Institute
MMI staff came out in force to make the inaugural event a success.

MMI's first Trunk or Treat event draws big crowd

Organizers called the event, which was held Oct. 29 outside the Munroe-Meyer Institute main office, a "tremendous success." The ev ent, which drew nearly 200 families, was designed as a fun and easy way for families with children with intellectual and developmental disabilities to trick or treat, with MMI departments and partners distributing candy from the trunks of decorated cars.
 

For more MMI Halloween fun, check out the MMI Facebook page.
From left: MMI's Kris Althouse, Jessie McMordie, Amy Nordness, Ph.D., and WIN chair Carey Hamilton and members Linda Hoegemeyer and Shannon Sands.

Women Investing in Nebraska invest in Munroe-Meyer

Two $85,000 grants from  Women Investing in Nebraska (WIN)  will boost efforts to help victims of domestic violence and infants who spent time in a neonatal intensive care unit get needed medical assessment and treatment.

WIN announced its grants to the  Brain Injury Alliance of Nebraska and the Munroe-Meyer Institute at its 2017 grant awards celebration on Oct. 5.
From left: MMI Director Karoly Mirnics, M.D., Ph.D., Max Kurz, Ph.D., Vice Chancellor for External Affairs Bob Bartee and Sen. Robert Hilkemann, D.P.M.

MMI in the spotlight for state senator's visit

Nebraska State Sen. Robert Hilkemann, D.P.M., who represents Omaha's District 4, visited MMI in October, touring the building and viewing presentations by MMI Director Karoly Mirnics, M.D., Ph.D., and representatives of several departments.
Mackenzie Smith, left, and Nichole Cordle at the Academic Evaluation and Intervention Clinic.

Academic Evaluation and Intervention Clinic makes impact

The Academic Evaluation and Intervention Clinic run by the Munroe-Meyer Institute's Department of Psychology currently is accepting referrals for the spring semester.

The clinic  is designed to provide academic help to children with intellectual and developmental disabilities, as well as provide parental support sessions on issues such as special education, coordination with teachers, writing strong individualized education program goals, and accessing community resources and respite services.
Genetic counselor Sara Fisher, right, meets with a client.

Genetic counseling staff growing at MMI

After hiring three new team members this fall, MMI will have 12 genetic counselors on staff, 75 percent of the total number of genetic counselors in the state of Nebraska.

The recent growth at MMI mirrors national growth in the field -- it's estimated that the number of genetic counselors in the U.S. will increase 29 percent by 2024 -- in part because of the incredible advances in genetic testing over the past decade. Also, UNMC soon will be offering a genetic counseling degree, and the specialty has grown so much that the first nationwide Genetic Counselor Awareness Day will be marked on Thursday.   Read more here.  
Job coach Pat Dunlap, left, works with Beth Nietzel during her internship with the MMI Community Engagement office.

Project SEARCH intern welcomed to community team

As Beth Nietzel shuffles through the files on the table, she stops briefly to say "Hi" to a visitor, then quickly returns to the task at hand.

It's Nietzel's first rotation as an office assistant at the Munroe-Meyer Institute as part of the UNMC/Nebraska Medicine Project SEARCH, and her attention to detail and focus on her job is her top priority. 
Read more here.  
From left, MMI's Erin Kaspar, Ashley McClain, Dr. Mirnics, Colleen Gibilisco, September  Standout Tasha Tyson, Karissa Scott and Sara Fisher.

MMI Standouts program seeks nominations

October's MMI Standouts are  Ashley McClain, p sychology;  Sara Fisher, genetics; Colleen Gibilisco, e ducation;  Erin Kaspar,  Human Genetics Laboratory; and  Karissa Scott, Human Genetics  Laboratory. They recently met for lunch with MMI Director Karoly Mirnics, M.D., Ph.D.

November's MMI Standouts are  Renee Payton, occupational therapy; Maggy Gutierrez, developmental medicine; Holly Dunning, UNMC Sponsored Programs; Jes Niemeier, Center for Autism Spectrum Disorders (CASD) early intervention; and Amber Godsey, CASD. They will meet with Dr. Mirnics later this month.

Nominations are being accepted for future monthly Standout Awards. Awardees will be  invited to lunch with Dr. Mirnics, receive a coffee mug or water bottle and have their picture featured in MMI Monthly.

Anyone in the MMI community may be nominated, and anyone on the UNMC campus or in the greater Omaha community may nominate. Anyone who works or volunteers at MMI is eligible, and up to five individuals will be selected monthly for this honor.

Nominations are due by 8 a.m. on the 15th of each month for the next cycle of Standouts. These nominations may be submitted online or e-mailed to  Sandy Willett for consideration .

More than 100 people registered for the family support event.

Family support event in central Nebraska draws crowd

On Sept. 23, staff from the Munroe-Meyer Institute held a family support event at the Edgerton Explorit Center in Aurora, Neb., offering community resources for attendees and an inclusive environment for children with disabilities and their families.
 
More than 100 individuals registered for the event and 12 community vendors hosted a resource table. Vendors included Arc chapters from Grand Island and Kearney, the Lincoln Arc and Autism Family Support Network, two of the Medicaid Managed Care Organizations, the Department of Health and Human Services Division of Public Health, the Nebraska Respite Network, the Early Development Network, Assistive Technology Partnership, the Spina Bifida Association, Families Care and a few local allied health providers.
 
Many families expressed gratitude that the event was held in central Nebraska. 
 
MMI parent resource coordinators (PRCs) Jennifer Hansen and Mandi Reinders helped coordinate the event.
 
Sarah Swanson, Family Care Enhancement Project manager, said that she was pleased with how the PRCs and partners worked together to make the event a success.
News in brief


"Plaid Out" event remembers Dr. Sanger
The late Warren Sanger, Ph.D., longtime director of the MMI Human Genetics Laboratory, was known about the institute for his eye-catching plaid dress shirts. To mark Dr. Sanger's birthday this year on Oct. 6, the laboratory organized a "plaid out" event as a way to remember and honor Dr. Sanger, who passed away in 2015

Drs. Fisher, Piazza share expertise at conferences
Wayne Fisher, Ph.D., director of the Center for Autism Spectrum Disorders, and Cathleen Piazza, Ph.D., director of the pediatric feeding program, gave invited addresses to about 1,000 attendees of the Florida Association for Behavior Analysis Conference in Daytona Beach in October. Dr. Fisher also will be giving a two-day course on the functional analysis and treatment of problem behavior to Italian behavior analysts in Rome, Italy, on Nov. 19 and 20.

Notes:
  • Jennifer Sanmann, Ph.D., director of the Human Genetics Laboratory, passed her molecular boards exam and now is a diplomate of the American Board of Medical Genetics and Genomics (ABMGG), certified in Clinical Molecular Genetics and Genomics.
  • Lois Starr, M.D., recently achieved board certification in clinical cytogenetics and genomics through the American Board of Medical Genetics and Genomics (ABMGG). Dr. Starr is the only clinical geneticist in the state of Nebraska with a subspecialty laboratory certification.
  • A team of Human Genetics Laboratory staffers participated in the 2017 Omaha Buddy Walk® and helped raise funds to support local programs and services as well as National Down Syndrome Society advocacy and public awareness initiatives that benefit all individuals with Down syndrome.
  • Dr. Sanmann and marketing specialist Nikki Hackendahl recently traveled to Columbus, Ohio, for the 36th Annual National Society of Genetic Counselors (NSGC) Educational Conference. This event brings together 1,900 genetic health care professionals and provides opportunities to engage with those currently using HGL for testing and to network and showcase services to potential clients.
  • Bhavana Dave, Ph.D., and cytogenetic technologist Abby Haggerty recently performed an inspection for a laboratory in Texas to ensure their ongoing accreditation through the College of American Pathologists (CAP).
  • Jennifer Burt, Ph.D., in the department of psychology, is part of a three-year, $315,000 Clinical Scholars grant from the Robert Wood Johnson Foundation (RWJF) for its innovative Dusk to Dawn program for at-risk youth.
Upcoming Events
 
Upcoming events of interest to the MMI community:

Nov. 8: 3-9 p.m. Meyer Foundation for Disabilities (MFD) fundraiser, Don & Millie (344 N. Saddle Creek Rd. location only), 20 percent of every dollar spent on food and drinks will go back to MFD.
Nov. 10: 8-4:30 p.m. Autism Action Partnership (AAP) Summit, "Live Without Boxes: Embracing Autism in our Community," with keynote speakers Caren Zuker and John Donvan, authors of "In a Different Key," and Daniel Openden, CEO of the Soutwest Autism Research & Resource Center, Scott Conference Center, 6450 Pine St., Omaha.
Nov. 27: 4-8 p.m. Meyer Foundation for Disabilities (MFD) fundraiser, Panera ( 344 N. Saddle Creek Rd. location only), 20 percent of every dollar spent on food and drinks will go back to MFD. You must bring a flyer or show the electronic flyer to the cashier. Ordering online? Enter "FUND" in the promo code to donate to MFD.
Nov. 28:  Giving Tuesday. The national day celebrating nonprofits. MMI supporting organizations, including the Meyer Foundation for Disabilities, the Scottish Rite Foundation of Nebraska and the Hattie B. Munroe Foundation will have fundraising websites at the Giving Tuesday site.  
Links of the month
 
News from around the internet of interest to the MMI community.

WOWT inteviews Brett Kuhn, professsor of psychology at MMI, in the story "UNMC child psychologist on getting your kids to sleep."

From The Omaha World-Herald: MMI's Director of Genetic Medicine Omar Rahman, M.D., is featured in "Molly is a Success Story," which tells of gene therapy that improved an Omaha teen's vision.

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