This week we had the privilege to talk to Dr. Elizabeth Head, Professor and Vice Chair for research at the University of California, Irvine in the department of Pathology. Dr. Head has published more than 150 peer reviewed papers and has dedicated over 20 years to the study of aging and Alzheimer’s disease with a focus on people with Down syndrome.

Head Lab: https://sites.mind.uci.edu/headlab/

ABC-DS study - https://www.nia.nih.gov/research/abc-ds

DSConnect - https://dsconnect.nih.gov/

Center for Aging Research – Down syndrome - https://sites.mind.uci.edu/cfar-ds/

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/27/171-alzheimers-disease-in-people-with-down-syndrome-dr-elizabeth-head/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

The world lost pioneering Down syndrome advocate Carl Erskine on April 16, 2024, at the age of 97. Carl and his wife Betty, were involved deeply with the Special Olympics and charities which aimed at helping people with developmental disabilities such as his son Jimmy. Carl Erskine was a MLB All-Star, World Series Champion, ally of Jackie Robinson and the last surviving member of the “Boys of Summer” Brooklyn teams of the 1950’s. To honor Carl’s life, we revisit our episode with documentarian Ted Green discussing his film ’The Best We’ve Got: The Carl Erskine Story’. As Ted says in this conversation, Carl and Betty are the perfect embodiment of what is on Jackie Robinson’s tombstone.

“A life is not important except for the impact it has on other lives“.

Godspeed Carl.

Website: https://www.carlerskinefilm.com

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/21/170-celebrating-the-life-of-carl-erskine-with-ted-green/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

This week we are fortunate to have Ben Hughes back on the podcast to discuss the Down Syndrome Diagnosis Network’s (DSDN) annual “Rockin’ Retreats” that offer our community the connection and respite caregivers truly need.

Retreat information page: https://www.dsdiagnosisnetwork.org/dsdn-retreats

Dad's retreat registration page: https://form.jotform.com/DSDN/2024-rockin-dad-retreat

Mom's retreat registration page: https://form.jotform.com/DSDN/2024-rockin-mom-retreat

DSDN website: https://www.dsdiagnosisnetwork.org/

DSDN Facebook Page: https://www.facebook.com/DownSyndromeDiagnosisNetwork

DSDN main fundraising page: https://dsdn.networkforgood.com/projects/201851-2024-dsdn-rockin-fundraising

A link to Ben’s personal DSDN fundraising page: https://dsdn.networkforgood.com/projects/207713-ben-hughes-s-fundraiser

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/04/14/169-the-annual-dsdn-retreats-with-ben-hughes/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Our son turned 14 last weekend and in this episode we reflect on the joys, challenges and growth we've experienced together on this journey with Liam.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/03/09/168-liams-14th-birthday-sharing-some-insight/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

This week we revisit our interview with Lynette Louise who is board certified in Neurofeedback. We were very interested in the science of Neurofeedback but early on in the conversation we moved to a serious discussion about the use of the r-word and the reasons why Lynette uses it. This episode may feel a bit intense for many of you and we understand why, but we highly recommend listening all the way through to the end.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/02/25/167-a-discussion-about-using-the-r-word-with-lynette-louise/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

This week we have the wonderful Julie Picot back on the show to discuss her experience transitioning her daughter, Elyse from TK to Kindergarten. We also touch upon how very often parents feel shame when guiding their school aged children out of diapers.

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/02/17/166-finding-the-right-supports-without-shame-with-julie-picot/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

Dr. Ilona Kleiner has been both our children's pediatrician since birth. Today we discuss with her the importance of always seeing the whole child and how her care for Liam really isn't any different than that of a typical child.

Dr. Kleiner's Bio: https://www.pamgdocs.com/copy-of-about-our-doctors-1

Recommend books:

What’s Going on Down There?  by Karen Gravelle

What’s Happening to My Body by Lyna Madras

Guy Stuff by Cara Natterson

It’s Perfectly Normal by Robin Harris

Being You: The Body Image Book by Charlotte Markey

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/01/28/165-picking-the-right-pediatrician-with-dr-ilona-kleiner/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

In this episode, we discuss Charlotte Fien’s path to advocacy, breaking down the barriers of education, the love story between her and her husband Riley, and how her infectious can-do attitude has influenced him to break down barriers in his own life. It is the story of two humans creating the life they want to live and never taking no for an answer.

Charlotte & Riley Forever FB Page: https://www.facebook.com/autismintune 

A World Without Down’s Syndrome (Documentary): https://www.amazon.com/gp/video/detail/B07MSHKFKQ/ref=atv_dp_share_cu_r

Charlotte’s Speeches:

2017 United Nations: https://youtu.be/1Xqku6RwaAY?si=KYf7jnx-Uc56cgRP

2018 United Nations: https://youtu.be/FHglwa8vlYg?si=hwjusGDIsVSh5_ty

Episode Transcript: https://ifweknewthen701833686.wordpress.com/2024/01/21/164-charlotte-and-riley-not-taking-no-for-an-answer/2/

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.