Kids With Heart National Assn for Children's Heart Disorders, Inc

Kids With Heart National Assn for Children's Heart Disorders, Inc A non-profit organized to provide support, education, resources,& information to families of children who have heart disorders congenital heart defect support, education, resources, advocacy, and awareness

Operating as usual

Thought I would share this as so many of our chd survivors need this big time: Coughing visualization illustrates the be...
07/14/2020
Coughing visualization illustrates the benefits of wearing a good mask

Thought I would share this as so many of our chd survivors need this big time:
Coughing visualization illustrates the benefits of wearing a good mask
https://news.wisc.edu/coughing-visualization-illustrates-the-benefits-of-wearing-a-good-mask/?fbclid=IwAR2_iHdzA-jUA6fCXpC1m9e_Mtw0Uje6XVEfvzYSppBUpmxX49bvUfr5tOA

A research team made a video of a modified mannequin whose mouth releases a puff of air containing fog, in order to see how well masks contain the fog and visualize results from testing different mask styles.

Thought I would share this as so many of our chd survivors need this big time: Coughing visualization illustrates the be...
07/14/2020
Coughing visualization illustrates the benefits of wearing a good mask

Thought I would share this as so many of our chd survivors need this big time:
Coughing visualization illustrates the benefits of wearing a good mask
https://news.wisc.edu/coughing-visualization-illustrates-the-benefits-of-wearing-a-good-mask/?fbclid=IwAR2_iHdzA-jUA6fCXpC1m9e_Mtw0Uje6XVEfvzYSppBUpmxX49bvUfr5tOA

A research team made a video of a modified mannequin whose mouth releases a puff of air containing fog, in order to see how well masks contain the fog and visualize results from testing different mask styles.

06/18/2020
www.survivalcoalitionwi.org

Attn All Wisconsin Heart Families: This just in from the Survival Coalition at the Waisman Center:

From: Elizabeth P. Hecht [mailto:[email protected]]
Sent: Wednesday, June 17, 2020 1:40 PM

Virtual Family Focus Group - We Need Your Input!

Survival Coalition is interested in talking with of families of school age children who have a disability and an IEP (Individualized Education Plan). Two focus groups will meet, one for families anywhere in Wisconsin and one for families in Milwaukee Public Schools.
• How have you and your child been impacted by school closings this spring?
• What are your concerns as you think about school starting in the fall?
Information will be used to help Survival advocate for students with disabilities with the Department of Public Instruction in preparation for fall school openings.

When: Wednesday June 24th, 12 – 1:15 PM
Click here to register https://us02web.zoom.us/meeting/register/tZAof-mhrzgpH9CEDuWazi-SIq96ELiA5R4a

Thursday June 25th, 4 – 5:15 PM
Click here to register https://us02web.zoom.us/meeting/register/tZ0vce6qrT8rGdV7X-xATnQmZAHAhOII0nyr

Where: Join from your home using your phone and computer

Register: After registering, you will receive a confirmation email containing information about joining the meeting

Questions: Contact Lynn at [email protected]

To Learn more about the Survival Coalition go to: survivalcoalitionwi.org/
This event is co-sponsored by WI FACETS, Family Voices of Wisconsin and Disability Rights Wisconsin

Elizabeth Hecht
Waisman Center, UCEDD
Specialist for Public Policy
608-263-7148

05/10/2020

Happy Mother's Day to all my "mom" friends, especially if you are a "mom-aunt" or any other mom-helper : )

04/29/2020
UW-Madison Parenting in a Pandemic Survey

Greetings,
Do you work with or know families with young children? Or, are you the parent or legal guardian of a child 12 years or younger? Researchers at the University of Wisconsin - Madison are conducting an online survey investigating the experiences of parents and children during the COVID-19 pandemic. We are recruiting parents of children 12 years old or younger. Parents must be at least 18 years old to participate.

Families may be eligible to receive a $15 electronic gift card to Target, Amazon, or Walmart for their participation. The survey takes about 30 minutes to complete. Participation is completely voluntary and all information remains confidential. Please share with individuals and families that you work with and/or with others in your networks.

Use the following link to access the survey: https://uwmadison.co1.qualtrics.com/jfe/form/SV_eVcsxnKIuTfRmUl

Thank you!
Kerr Lab


Kristin Litzelman, Ph.D.
Assistant Professor | School of Human Ecology | Human Development and Family Studies
State Specialist | Division of Extension
University of Wisconsin-Madison
4115 Nancy Nicholas Hall | 1300 Linden Drive | Madison, WI 53706
[email protected] | 608-262-3314

UW-Madison Parenting in a Pandemic Survey

02/14/2020

I have laid my son on an operating table and kissed him as he fell asleep. I have handed him to a surgeon knowing they would stop his heart and prayed it would beat again. I have learned more then I ever thought I could. I have cried more then I ever thought possible and celebrated victories that I never would have thought of. I have walked a road I never knew existed, and will walk it forever. I am a Heart Mom

Congenital Heart Defect Awareness Week. A special thank you to Lisa Killingsworth for giving me permission to share this!!

Just a reminder that February 7th thru February 14th is the official Congenital Heart Defect Awareness Week!   If you ar...
02/05/2020

Just a reminder that February 7th thru February 14th is the official Congenital Heart Defect Awareness Week! If you are doing anything special in honor of this historic event, please share your pictures and ideas here!!!! Go Spread the Word so that no family ever has to feel alone again!!!! Thank you for your help!!!!!! Michelle L. Rintamaki
President, Kids With Heart National Assn for Children’s Heart Disorders, Inc.
(mom to John, 32, tetralogy of fallot with pulmonary stenosis, surgery 1/31/1990, arrhythmias- 2003-2006; pulmonary valve replacement 8/2/2005
page https://www.facebook.com/kidswithheartnachd1985/ www.kidswithheart.org

Make Every Day CONGENITAL HEART DEFECTS Awareness Day! Items available at www.kidswithheart.org

01/23/2020

Attn: All Wisconsin Parents:

Advocacy for Change 2020

Thursday, March 12
8:30am - 4:30pm
Madison Concourse Hotel
Don't Get Left Behind!

We have a limited number of spots and registration is filling up fast. Make sure you don't miss out this year.

2020 is the year to build your confidence and learn how YOU can impact policy and systems change. Connect with others, hear from disability experts and meet face-to-face with your elected officials.
Registration Form
Scholarships are available to participate for parents, family members and siblings.

If you have child with a disability or special healthcare need, you’ve come to the right place. We’re here to help you navigate services, connect with other families, and learn how to advocate for your child, plus be a voice for all children with special needs.


Each family has a voice • Together, our voices will be heard!

Connect with us
Share Share
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Copyright © 2020 Family Voices of Wisconsin
Our mailing address is:
PO Box 5070, Madison WI 53705 Here is the link to the registration form: https://forms.office.com/Pages/ResponsePage.aspx?id=z25Y2NFhDU6Grc9L9lWVWobUcteA7oBHrOUdmB9niYBUNkRCVzlDT0hSNlRGMzFKNFZRNzBESjRMSC4u

12/23/2019

Merry Christmas, Happy Holidays, and whatever else you may be celebrating!!! May you have a healthy and happy 2020!!!

Looking for families from NE Wisconsin who have children with congenital heart defects and are interested in getting tog...
11/07/2019
Kids With Heart NACHD

Looking for families from NE Wisconsin who have children with congenital heart defects and are interested in getting together with other families. We have a new local family with a 9 yr old who would like to meet other kids her age. Please register at www.kidswithheart.org and click on "join" or PM me back. thank you so much! Michelle L. Rintamaki
President, Kids With Heart National Assn for Children’s Heart Disorders, Inc.
(mom to John, 32, tetralogy of fallot with pulmonary stenosis, surgery 1/31/1990, arrhythmias- 2003-2006; pulmonary valve replacement 8/2/2005} www.kidswithheart.org
page https://www.facebook.com/kidswithheartnachd1985/

Kids With Heart National Assn for Children's Heart Disorders, Inc's cover photo
10/23/2019

Kids With Heart National Assn for Children's Heart Disorders, Inc's cover photo

Another important research finding!!!
10/11/2019
Parental alcohol exposure tied to congenital heart disease risk in children

Another important research finding!!!

Alcohol consumption of would-be parents may be a significant risk factor for the development of congenital heart disease in their subsequent children, according to a study published in the European Journal of Preventive Cardiology. In a meta-analysis of 55 studies, researchers found that mothers who...

For All Wisconsin Families: 30th Annual Children Come First ConferenceNov 11 -12,  2019Glacier Canyon Lodge at the Wilde...
10/02/2019
Children Come First Conference

For All Wisconsin Families: 30th Annual Children Come First Conference
Nov 11 -12, 2019

Glacier Canyon Lodge at the Wilderness Resort, Wisconsin Dells

The Children Come First Conference is for those caring for, working with, or interested in the well-being of children and youth with social, emotional or behavioral challenges.

Featuring 2019 Keynote Speakers:

Mona Delahooke, PhD

Dr. Delahooke is a nationally-known psychologist and best-selling author of the book, Social and Emotional Development in Early Intervention: A Skills Guide for Working with Children. She has over 25 years of experience working with, and caring for, young children and their families. In her private practice she consults with parents, school districts, preschools and regional centers in the areas of screening, assessments, intervention and support for families with young children.

David Romano MSW, LPCC

David has been a mental health advocate for over 25 years. In his work as an Active Minds speaker and advocate, he has collaborated with many organizations. David lives with depression and experienced the lows of self-injury and depression in high school. He has committed his life to letting others know it isn't a weakness to ask for help. David encourages audiences to support each other and eliminate the stigma attached to mental illness.

54 Workshops in all - For a complete list of all workshops, descriptions and to register go to the Conference website:
www.ccfconference.org
or
Direct registration link:
CCF Registration

**Youth Track available for ages 12 - 24

For Group Registration call 608-446-3290

Sponsorships and Exhibitor Booths are still available. Contact Amy at 608-446-3290 [email protected]

The Children Come First Conference is presented by Wisconsin Family Ties, www.wifamilyties.org

Speakers, workshops and more for the 30th Children Come First Conference, November 11-12, 2019. Glacier Canyon Lodge at Wilderness Resort. Baraboo WI

Many people want to try "herbal supplements", thinking they are not drugs. Please read this and talk to your doctor befo...
10/01/2019
Pictures: 15 Herbal Supplements You Shouldn’t Try

Many people want to try "herbal supplements", thinking they are not drugs. Please read this and talk to your doctor before using them!

Not all herbs and supplements are safe, especially if you have certain medical conditions or take some drugs. Find out which ones you may need to skip.

09/29/2019

How super ironic that our son, John Rintamaki, was born on World Heart Day with Tetralogy of Fallot, congenital heart defects. Happy 32nd Birthday to a great heart defect survivor!!!! Proud of you!

Kids With Heart National Assn for Children's Heart Disorders, Inc
09/06/2019

Kids With Heart National Assn for Children's Heart Disorders, Inc

Keeping fingers crossed for results from this study!!!
09/05/2019
SD Researchers Land $3.1M to Study Pediatric Heart Condition

Keeping fingers crossed for results from this study!!!

An international effort led by UC San Diego and Rady Children’s Hospital researchers recently landed a $3.1 million grant to search for better ways of treating a pediatric heart condition.

08/26/2019

A special thank you to all of our kids with heart families who volunteered at our event yesterday, Don and Amy Jensen, Lisa Killingsworth, Kim Jankowski! Also, thank you to those kids with heart families who donated Raffle Prizes: Kim Jankowski, Cheryl Dejardin, Amy Kafka, Lisa Killingsworth, Gloria Ostrenga, and Barb Kopperud! We had beautiful weather for a motorcycle/ car ride!! Thank you to all who came out! A GREAT BIG SHOUT OUT TO JACKSON POINT SPORTS GRILL AND BANQUET, TIM VANDENENG, THE WILSON HUFF BAND, and all of our sponsors!!! THANK YOU!

Kids With Heart National Assn for Children's Heart Disorders, Inc
08/22/2019

Kids With Heart National Assn for Children's Heart Disorders, Inc

08/07/2019

Kids With Heart received this and thought some of you may be interested: We are excited to announce that the Fall CoP ASD/DD will be held September 27th in partnership with the DPI Special Education Team and will focus on Supporting Neurodiversity in the IEP. The gathering will be at the Potawatomi Hotel and Conference Venue in Milwaukee.

We are pleased to host Dr. Markeda Newell as our keynote speaker who will discuss bias as it relates to a comprehensive special education evaluation, with a lens of neurodiverse students (e.g. students with autism, emotional behavioral disabilities, other developmental disabilities, etc.). To learn more about Dr. Newell’s work on Culturally Responsive Problem Solving, check out this learning module.

This meeting will also include a panel discussion with parents/families and breakouts on Social and Emotional Skills in the IEP, Student Led IEPs, Early Childhood IEP Development, Fetal Alcohol Spectrum Disorder, Motor Skills in the IEP, Present Level of Performance, Transition Development/Adaptive Skills in the IEP.

This is a free event with lunch included, but you must register at https://forms.gle/TmQL8BqzvK3R4omB8 before September 20th. Attached is a flyer that includes more information. Please share widely and we look forward to seeing you in September. On behalf of the Planning Team,
Tim

Timothy Markle
Senior Outreach Specialist
UW-Madison Waisman Center
Director, Southern Regional Center for Children and Youth with Special Health Care Needs
608-262-8033
[email protected]
Supporting Neurodiversity in the
Individualized Education Program (IEP) Process
2019 DPI Collaborative Special Education Supports/CoP ASD-DD Meeting
Keynote:
Supporting Neurodiversity in the IEP Process
Dr. Markeda Newell
Other topics include: Family/Self Advocate Panel, Addressing Bias in the IEP Process, Social and Emotional Skills in the IEP, Student Led IEPs, Early Childhood IEP Development, Fetal Alcohol Spectrum Disorder, Motor Skills in the IEP, Present Level of Performance, Transition Development/Adaptive Skills in the IEP
Friday, September 27, 2019
Potawatomi Hotel and Conference Venue Check-in begins at 8:00/Program is 8:30–3:00
This is a FREE event! (but you must register)
REGISTER: https://forms.gle/TmQL8BqzvK3R4omB8
Lunch is included (breakfast will be on your own).
QUESTIONS: Contact Sonja Oetzel at (608) 265-8955 or email her at [email protected]
Participants should make their own travel arrangements as needed.
Contact information for the event venue is below:
Potawatomi Hotel & Conference Venue 1611 West Canal Street Milwaukee, WI 53223 Reservations: 1-844-217-4100
Please JOIN US for the DPI Collaborative Special Education Supports and Community of Practice on Autism Spectrum Disorder and other Developmental Disabilities FALL 2019 Gathering. This gathering will offer opportunities for educators, self-advocates, family members, and community partners to collaborate, build new skills, network, and, most of all, share best practices that improve experiences for students on the autism spectrum or with other developmental disabilities.

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