Direct Communication
From MGN Director Dr. Mathew J Edick and MGN Co-Director Dr. Susan A Berry

Midwest Genetics Network (MGN) would like to take this opportunity to introduce you to our newsletter. This is a new effort by the network intended to keep you informed of the work happening across the network and let you know about opportunities to get involved. In each issue, we we will shine the spotlight on a selected member of MGN in our MGN FACES section. This issue features MGN Advisory board member Dr. Michael Finkel; you can read about his passion for MGN's work.

We will have sections in the newsletter each month that include a deep dive into one of MGNs projects or initiatives, notice of upcoming events from MGN and our partners, and of course opportunities to roll up your sleeves and get engaged with MGN's work. We are particularly excited about this issue's deep dive into MGNs Patient and Family Council. MGN's Lead Family Member Kristen Reese knows first-hand the importance of bringing the family and patient voices to the forefront when working to improve access to genetic services. Kristen has attracted a vigorous and growing group of family representatives and we are looking forward to what they will accomplish!

We truly hope you find the newsletter to be useful and enjoyable.

Regards,
Mat and Sue
Sincerer
MGN FACES
What inspired you to serve?

"As a phenylketonuria (PKU) patient, I have always been passionate about the rare diseases community. I have been so fortunate to receive incredible medical care throughout my life including the treatments I required to stay healthy like metabolic formula and low protein foods. Having the opportunity to maximize my own quality of life, I am inspired to advocate for expanded access to specialty providers, testing and therapies for all individuals diagnosed with a rare disease. My service with MGN provides countless ways to achieve this goal."
Dr. Michael Finkel
MGN Advisory Board Member
MGN DEEP DIVE
PATIENT AND FAMILY COUNCIL
Who We Are
The Midwest Genetics Network recognizes that individuals with genetic conditions and their family members bring an important and unique perspective to the work and are valued for their knowledge and experience. Patient and family representatives are invited to participate as key stakeholders in the various workgroups, as well as on the new, dedicated Patient and Family Council. The council offers an opportunity for patients, parents, and family representatives to connect with others, provide input on projects related to increasing access to genetic services, and develop resources and materials for individuals and families impacted by genetic conditions. Members of the council are supported by MGN’s Parent Coordinator.
What We Do

Council members are able to interact with individuals from other states within the region in order to network and learn from each other. The individuals on the council have a diverse array of experiences with a large variety of genetic conditions. The real-life experience they bring to the table ensures that project work is relevant, timely, and beneficial. Currently the council is reviewing genetic resources for patients and families to determine 1) what resources exist to help families navigate genetic services, 2) best practices for sharing information with patients and families, and 3) what gaps may exist that the council could address.
Why We Are Here

The Patient and Family Council is open to any individual with a genetic condition, as well as parents and other family members, from within the seven-state region. MGN has a long history of including patient and family stakeholders in the work, and the result has been several key projects with lasting impact within the region. 

For more information or to join the Patient and Family Council, contact Parent Coordinator Kristen Reese at [email protected].
MGN News You Can Use
The 2021 Midwest Genetics Network’s Annual Virtual Meeting is scheduled for September 29-30th.

If you are interested in learning more about MGN and the annual meeting, please contact us at [email protected]
TELEGENETICS - TRAINING OPPORTUNITY


The Midwest and Heartland Genetics Networks are collaborating with the Upper Midwest Telehealth Resource Center (UMTRC) to offer Telegenetics: Strategies, Tips and Resources for the Novice or Experienced Practitioner. These programs are appropriate for genetic providers, genetic counselors and residents or students. 
Updated curriculum Includes

  1. Optional pre-workshop online module to complete at your own pace
  2. One day virtual workshop includes the following topics:
  • Telehealth and Technology
  • Policy & Reimbursement
  • Needs Assessment, Consent and EMRs
  • Web Etiquette and Settings
  • Shared Resources
  • Workplans and Outcomes

There is no cost to participate in this workshop, but you must register to attend.
Upcoming Training Dates

  • May 10, 2021 for Genetic Counselors and Students; The National Society of Genetic Counselors (NSGC) has authorized Heartland Regional Genetics Network to offer up to 0.55 CEUs or 5.50 Category 1 contact hours for this activity.
  • May 11, 2021 for Physicians and Residents; The American College of Medical Genetics and Genomics designates this live activity for a maximum of 5 AMA PRA Category 1 Credit™.
Please contact Amy Stagg at [email protected] for more information.
Plain Communities Work Group Community of Practice Forums

April 1, 2021, 11:00 am EST
Topic: Helping Families with Payment Options
Presented by: Katie Williams
For more information or to join the discussion, please contact [email protected]
Improving Care for Developmental Disabilities and Dysmorphic Features
The MGN continuing education and quality improvement project is pleased to offer our 3rd live virtual learning collaborative webinar Improving Care for Developmental Disabilities and Dysmorphic Features!
 
Please join us on Thursday, March 25th from 10:00 AM-11:00 PM (CST)/11:00 AM-12:00 PM (EST) for Dr. Susan A. Berry’s live presentation and Q&A on "Dysmorphology 101 - An Introduction to Dysmorphology”.
 
Advance registration is required for this free webinar.
After registering, you will receive a confirmation email containing information about joining the meeting. You can them also add the meeting to your calendar.
 
Please contact Danielle Baumgartner at [email protected] for more information.

Did you know?
Did you find this e-newsletter useful? Do you have suggestions about the types of content that would be especially useful for you? Please email [email protected] with your feedback and ideas.
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UH7MC30775, Midwest Genetics Network for $598,596 (0% financed with nongovernmental sources). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHSA, or the U.S. Government

Midwest Genetics Network | https://midwestgenetics.org