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Showing posts from February 7, 2021

Navigate Newborn Screening

Newborn screening is an essential public health service that is important for families to understand. Although nearly all babies born in the U.S every year receive newborn screening, only about two out of three people are aware of newborn screening and only about one out of three people can correctly identify a definition of newborn screening.  Expecting Health created a free educational module for families called Navigate Newborn Screening. In this short module, you will learn about the newborn screening process, questions to ask your healthcare provider, and more!  Sign up for free at https://expectinghealth.myabsorb.com?KeyName=NavigateNBS_F VIN

Mask Information

  From Family Voices Washington D.C. Update 2.2.2021 Types of masks.  With rising concerns about new variants of the SARS-CoV2, some experts are recommending that people  wear two masks  (Washington Post, 01/27/21) or use  high-filtration masks   Washington Post, 01/20/21). See  Understanding Mask Types  (American Dental Association, 10/02/20); and   this article  (from CBS News, 01/27/21) explains the differences among mask types. See also  FAQ: Single or double? The latest advice on masks and  COVID  (Washington Post, 01/26/21). Counterfeit masks.  If seeking to buy an N95 mask, it is important to beware. Many mask manufacturers are  falsely labeling  their products as NIOSH-approved N95 masks  (photos of many counterfeit masks). NIOSH is the  National Institute for Occupational Safety and Health .  For more information, including a sketch of the way a genuine NIOSH-approved N95 mask is marked, see  Respirator Trusted-Source Information , from  T he National Personal Protective Techn

Your Guide to Child Care Financial Assistance

Tuesday, February 23 @ 1:00 pm - 2:00 pm   Webinar Please join Children's Bureau for this informative presentation about child care financial assistance in the State of Indiana. We will have a representative from CCDF to discuss the options that are offered and share additional information for families and community members.   Link to register: https://us02web.zoom.us/ meeting/register/tZEvc- 2hpzouGN0DmUPC_xK57S-b2vM_pkfd

Create Your Own Seizure Action Plan for #SAPAW2021

  From Child Neurology Foundation It's  Seizure Action Plan Awareness Week  (February 8th -14th) and if you don't have a seizure action plan in place yet, now is as good a time as any to prepare one! A Seizure Action Plan (SAP) contains tailored guidelines on how to respond during a seizure, based on a person’s medical history. It includes health and medical information specific to the person and helps others recognize seizures and the appropriate steps to take to keep him or her safe from injury or damage caused by prolonged seizures. Anyone living with epilepsy needs a seizure action plan – especially those with new-onset epilepsy and those with ongoing frequent seizures who had more than one seizure in the previous year.  How to create your own Seizure Action Plan: Visit  SeizureActionPlans.org  to learn more about what you should include in your plan and who to share your plan with. Use a template to create your individualized plan, such as: Seizure Action Plan Coalition

Elevating the Need for Health-Education Coordination to Support Children with Disabilities

Parents and families of children with disabilities and special health care needs have made clear that the pandemic has disrupted critical school-provided services, presenting significant challenges to well-being and development beyond teaching and learning. AMCHP hosted this discussion with Child Trends and the National Association of State Directors of Special Education, as well as including the Title V program perspective and that of individuals with lived experience, with a focus on how state public health systems can support schools in maintaining critical services for children with disabilities and special health care needs.

Red Flags for Genetics Survey for Families

What is the survey about: The goal of the survey is to capture the experience of families and parents with the early signs and symptoms (Red Flags) their children may have experienced on their journey before obtaining a genetic diagnosis. This information will be utilized to create educational materials for other families and providers. Who Should Take This Survey: individuals or families impacted by genetic conditions RED FLAGS  for GENETICS survey links: English Red Flag Survey Link:  https://www. surveymonkey.com/r/ MSRGNRedFlagSurvey Spanish Red Flag Survey Link:  https://es.surveymonkey. com/r/ EncuestaSenalesDeAlertaMSRGN Date Launched: January 25, 2021 Proposed Survey Close Date: March 20, 2021

February 2021 Toolkit: Celebrating Black History Month

From Autism Society of Indiana In honor of Black History Month, the top focus for our February Toolkit is on Autism and Race. There are significant disparities that exist in education, healthcare and support services for autistic individuals of color. Our aim is to shine a spotlight on these inequities, and provide more information and resources related to autism and race. The toolkit also provides resources for Relationship Building & Socialization, COVID-19 Vaccine education and continued COVID-19 support. View Toolkit

Solicitation of Nominations for Appointment to the Advisory Committee on Minority Health

Due March 4, 2021, 5:00 pm ET  --  Solicitation of Nominations for Appointment to the Advisory Committee on Minority Health The Department of Health and Human Services (HHS), Office of Minority Health (OMH) is seeking nominations of qualified candidates to be considered for appointment as a member of the Advisory Committee on Minority Health (hereafter referred to as the “Committee or ACMH”). The Committee provides advice to the Deputy Assistant Secretary for Minority Health on the development of goals and specific program activities for improving the health and the quality of health care minorities receive and eliminating racial and ethnic health disparities consistent with the Public Health Service (PHS) Act

UCB Family Epilepsy Scholarship Program

From CNF Opportunities and Announcements Newsletter 2.2.2021 The deadline to apply for a 2021 UCB Family Epilepsy Scholarship has been extended to  Monday, March 15.  This year,   UCB will award 30 scholarships of up to $5,000 and 3 scholarships of up to $10,000 to people living with epilepsy, their family members, and caregivers pursuing higher education. Learn more and  apply for a scholarship here.

2021 RARE Compassion Program Launch

From CNF Opportunities and Announcements Newsletter 2.2.2021 Now in its sixth year, the RARE Compassion Program connects U.S based medical students with rare disease patients and families to help foster meaningful doctor-patient relationships, inspire careers in rare disease care and research, and ultimately, build the next generation of future medical professionals as key advocates for their patients. If you would like to participate in this program, as either a patient family or a medical student,  please apply online  by  Sunday, February 28th.

BDDS Gateway FAQ for Individuals and Families

You may have heard about the new BDDS Gateway going live last week and maybe you still have questions.  BDDS has an FAQ for individuals and families, which can be seen below.  The FAQ can also be found here  along with a video tutorial and application instructions. BDDS Gateway FAQ Indiv Families by Family Voices Indiana on Scribd

Focus Group Opportunity for SMA and DMD