Lori Jones shares her personal journey with Huntington's disease, exploring its symptoms, family impact, and the importance of community and research. Lori shares with us insights into living with risk, making decisions about testing, and advocating for better understanding and treatment.

Keywords: Huntington's disease, genetics, neurodegenerative, family impact, genetic testing, community support, research, memoir, advocacy

Key Topics:

• Genetic inheritance and risk of Huntington's disease
• Family impact and personal stories of living with HD
• The importance of community, support, and advocacy in HD
• Current research, clinical trials, and future hope for HD treatments

Guest Bio:

Lori Jones has personally experienced the effects of Huntington’s Disease (HD) in her family and was instrumental in starting a Team Hope annual event in her area to raise awareness and support for research and community programs. She has been published in the Wisconsin HDSA Update Newsletter, and spoken in the public schools about HD, genetics, and presymptomatic testing. She has contributed short stories for Women in High Def by Diane Markins. A storyteller at heart, she regularly writes and speaks about her experiences with HD and many other topics to groups of all ages. Lori has three adult children and lives with her husband Chris in Wisconsin, when they aren’t escaping north to the Upper Peninsula of Michigan. “Spared: A Memoir of Risk and Resolve” is her first book.

Resources:

• Lori Jones’ Website
• Spared: A Memoir of Risk and Resolve
• Help 4 HD International
• International Huntington Association
• Huntington’s Disease Society of America
• Information on uniQure

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Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com

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Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.

In the realm of genetic counseling, understanding and support are crucial for families facing daunting medical news. When I sat down with Anna Chassevent, a seasoned genetic counselor, she shared valuable insights about the importance of walking alongside families during their journeys through uncertain medical terrain. In this post, we’ll explore her thoughts on meaningful communication, the role of personal experience in counseling, and how to foster a supportive environment for families in need.

Key words: genetic counseling, living well, meaning, resilience, uncertainty, patient experience, psychosocial support, healthcare, mental health, genetic diagnosis

Key Takeaways:

• The importance of walking alongside families through unknowns
• Integrating personal lived experience into clinical practice
• Making meaning of challenging news and decisions
• The role of hope, resilience, and living well

Guest Bio:

Anna is a board certified genetic counselor at the Kennedy Krieger Institute, specializing in pediatric neurogenetics. She graduated from The Johns Hopkins/National Institutes of Health Genetic Counseling Training program. She is also an associate professor, guest lecturer, student mentor, and published research author.

She is passionate about supporting families in living well no matter their or their child’s diagnosis through uncovering what is meaningful to them, holding onto their strengths, and recognising their freedom and responsibility amidst life’s unexpected challenges.

Anna has received training in a range of counseling methods and frequently incorporates logotherapy into her practice. In 2020, Anna was nominated by a patient for the esteemed Heart of Genetic Counseling Award.

She is also a cancer survivor and parent to a child with developmental and behavioral delays, which has profoundly shaped how she cares for the families she sees.

Resources:

• “Man’s Search for Meaning” book by Viktor Frankl
• What is logotherapy?
• Findageneticcounselor.org to search for a genetic counselor near you

Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com

Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com

Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.

In this conversation, Kate talks to Shannon Wieloch about the complexities surrounding therapeutic abortions, particularly in the context of heartbeat laws and genetic counseling. They explore the emotional and medical implications of these decisions, the role of genetic testing, and the impact of legislation on patient care. Shannon shares her experiences working with patients facing difficult choices in wanted pregnancies, emphasizing the need for compassion and understanding in these situations.

Keywords: abortion, therapeutic abortion, heartbeat laws, genetic counseling, patient care, emotional support, healthcare legislation, prenatal care, reproductive rights

Key Takeaways:

• The emotional weight of decisions surrounding pregnancy choices is profound.
• Heartbeat laws often prioritize legal definitions over medical realities.
• Genetic testing can provide crucial information but is not always necessary.
• Patients often face significant emotional and financial burdens when seeking care.
• Legislation can complicate access to necessary medical procedures.
• Many patients feel isolated in their experiences of making pregnancy decisions.

Guest Bio: Shannon M. Wieloch, MS, CGC, is a board-certified genetic counselor with more than 24 years of clinical and industry experience across reproductive, prenatal, infertility, and genomic medicine. She currently serves as Director of Genetic Counseling at Fairfax Cryobank and is the founder of Stork Genetics, LLC, where she provides patient-centered genetic counseling.

Shannon has served in senior clinical, product, and program management roles at Genome Medical, Mayo Clinic, CooperGenomics, and major academic medical centers. She has authored numerous peer-reviewed and professional publications, blog posts, and educational resources, and has regularly contributed to national conferences, podcasts, and professional committees within the National Society of Genetic Counselors.

Here are more resources related to today’s topic:

• Links to Shannon’s pages:
  • https://www.facebook.com/storkgenetic/
  • https://www.instagram.com/storkgenetics/
  • https://www.linkedin.com/company/stork-genetics
• “What You Need to Know About ‘Fetal Heartbeat’ Bills” by Madison Feller, Elle, published May 7, 2019
• “Doctors’ organization: calling abortion bans ‘fetal heartbeat bills’ is misleading” from The Guardian
• Center for Reproductive Rights
• National Network of Abortion Funds

Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com

Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com

Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.