News from the MN DeafBlind Project

September 2022

News from the MN DeafBlind Project September 2022
zoom_out_map

Happy 2022-2023 School Year!

I hope that you all had an incredible summer with time for both rest and fun!


As we are transitioning back into the school year, I look forward to opportunities to continue sharing resources and supports. Please know that you can always reach out to me with any questions you may have.


Best wishes for a great school year!

-Brandy

brandy.johanson.sebera@metroecsu.org

Highlights From the Summer

Family and Intervener Appreciation Picnic

On June 4th, 2022, we were so excited to host our annual Family & Intervener Appreciation Picnic after a 2 year break. Over 60 people joined us including children with deafblindness, their families and interveners. Being together in person was an incredible opportunity for connections between families and children to be made! Other highlights included a caricature artist, a balloon artist, face painting, delicious food and an ice cream truck! Thank you to all who attended and we look forward to seeing even more people next June. Save the date for June 3, 2023!

zoom_out_map

Zari is pictured here with a beautiful flower design painted on her forehead.

zoom_out_map

Teo is holding a fun balloon animal in one hand and getting a design painted on the other!

Image of three teenagers using a variety of assisted seating chairs sitting close together for the photo.
zoom_out_map

New friends Sadie, Mary, and Angelina are pictured together at the picnic.

Midwest Transition Institute

The Midwest Transition Institute (MTI) is an event during which several midwestern state DeafBlind projects share resources and efforts. MTI provides transition-aged youth, who are deafblind and planning to attend college or vocational programs or work a job, with an annual, regional transition experience to meet other deafblind teens, young adults and mentors. Families also connect with each other. Each year a different midwestern state hosts MTI.

Image description: A smiling white woman with brown hair and sunglasses wearing a purple shirt with rainbow colors is Ann on the left. A smiling white woman with short hair, a blue baseball cap, sunglasses and a gray shirt with blue lettering and a lanyard sitting in the middle is Jess. Matt, a white lab with his eyes closed, sits on Jess’s lap and is her guide dog. A smiling white woman with brown hair pulled back, white and black striped headband, sunglasses and dangly earrings sitting on the right is Brandy.
zoom_out_map

Brandy Johanson Sebera, MNDBP Family Engagement Coordinator, Ann Mayes, Education Specialist, and Jessica Eggert, mentor, are pictured here traveling to Woodstock, Illinois for the Midwest Transition Institute. We were excited to meet young adults, families, mentors and other DeafBlind Project staff from other states!

zoom_out_map
Eli Metzger is getting ready to scale the climbing wall during on of the evening activities for young adults.
zoom_out_map

What a great Minnesota group! From left to right: Steve and Christy Metzger (parents) and Eli Metzger (young adult), Ann Mayes (MNDBP education specialist), Rocky Hart (MTI mentor), John Filek (Helen Keller National Center

Regional representative), Jess Eggert (MTI mentor) with Matt, her guide dog and Brandy Johanson Sebera (MNDBP family engagement coordinator).

Family Spotlight

The Power of Story: Families of DeafBlind Children Tell Their Story

This resource link has become unavailable. When a new link becomes available, it will be updated in this newsletter. Apologies!

Share Your Story
zoom_out_map open_in_new

Future Family Spotlights

Our goal is to feature one child with deafblindness and their family in each newsletter. We have found that when families can hear similar joys and struggles that other families have gone through, it builds a sense of community and connection. It helps families to feel that they are not alone in this unique journey.


I will help you share your story in the way that works best for you; you can write or type the story up yourself, or we can do a phone call or video call, where I take notes and write it up. If you are open to sharing your story, please email brandy.johanson.sebera@metroecsu.org to get started!

zoom_out_map

Crescent Cove

The Crescent Cove Respite & Hospice Home for Kids is a vibrant and joyful home-away-from home for kids with life-threatening conditions, where each moment is embraced and celebrated. All services and stays provided at Crescent Cove to kids and families are at no out-of-pocket cost thanks to the generosity of donors who make this possible.

Kids and young adults, 0-21 years old, are able to stay in one of six bedrooms for overnight respite and, as needed, a sacred place at the end-of-life. Along with therapy rooms and recreational space, a family suite is available so that families may stay together while enjoying a temporary get-away from the constant demands of care giving. Nursing professionals trained in pediatric palliative care are on-site to provide daily care, meals, pain and symptom control, and Crescent Cove has a network of therapists to engage kids through music, art, or pet therapy, healing touch, spiritual care and hydrotherapy.


If your family is interested in learning more, you can complete this referral form and someone from Crescent Cove will connect with you.
zoom_out_map open_in_new

Accessible Pharmacy

From the Accessible Pharmacy Website: Accessible Pharmacy Services for the Blind is a comprehensive, home delivery pharmacy service specializing in the needs of people who are blind, DeafBlind and have low vision.


Our delivery, accessible support, accessible packaging, accessible labeling, including ScripTalk and Braille, as well as continuous and automatic refilling are FREE.


We do everything for you to make life simpler: we coordinate all details with your prescribers and insurance providers, including helping to keep costs as low as possible. Simply call us for a free consultation to determine if we are a good fit for you. 888-MEDS-007

Usher Syndrome Coalition Logo
zoom_out_map open_in_new

Usher Syndrome Coalition

Saturday, September 17th is the global Usher Syndrome Awareness Day! What better time to share with you information about the Usher syndrome and the Usher Syndrome Coalition.


Usher syndrome is one of the most common genetic causes of combined vision and hearing loss. According to usher-syndrome.org, over 400,000 people are estimated to have Usher syndrome.


"The Usher Syndrome Coalition is the only organization in the world working to find and support every individual and family living with USH, regardless of where they live, what type of USH they were born with, or their method of communication. Our mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families. Learn more and get involved."

The contents of this newsletter were developed under a grant from the US Department of Education, #H326T180020. However, those contents do not necessarily represent the policy of the US Department of Education, and you should not assume endorsement by the Federal Government. Project Officer: Rebecca Sheffield
MInnesota DeafBlind Project
mndbprojectinfo@metroecsu.org
Signature facebook
To request to join our private Facebook group just for parents (Minnesota DeafBlind Project Parent Corner), please email brandy.johanson.sebera@metroecsu.org