Jaime Albright Henighan shares her family’s journey after two of her sons, Joshua and Jorden, were diagnosed with a rare genetic kidney disease called APOL1-mediated FSGS (Focal Segmental Glomerulosclerosis).

Jaime’s story highlights the importance of early detection, education, and advocacy for families navigating this challenging condition. She discusses her partnership with Nephcure, a patient advocacy organization, and her mission to raise awareness about FSGS, especially among individuals of West African descent, who are at higher risk due to the APOL1 gene mutation.

Topics Covered:

• What is FSGS?: Understanding APOL1-mediated FSGS and its impact on kidney health.
• The Family’s Journey: How high blood pressure led to Joshua’s diagnosis, and the shock of discovering Jorden had the same condition.
• The Role of Genetics: Why individuals of West African descent are at greater risk and the importance of genetic awareness.
• Early Detection: How identifying symptoms early has helped Jaime’s sons manage their health.
• Advocacy and Education: Jaime’s work with Nephcure and her efforts to raise awareness globally, including in Ghana.
• Parenting Through Challenges: Jaime’s emotional journey as a mother and her advice for other parents navigating rare diseases.

Key Moments:

• Jaime explains how her family discovered FSGS and the challenges they faced in obtaining a diagnosis.
• Insights into the genetic factors behind APOL1-mediated FSGS and its prevalence in specific populations.
• Advocacy efforts to educate families and healthcare providers about the disease.

Guest Bio:

Jaime is a wife and mother of six. Her family resides in Alpharetta, GA. She is also a Forensic Interviewer and Podcast Producer at Tenderfoot TV. In 2021, her seemingly healthy 17 year old son, Joshua, was randomly diagnosed with high blood pressure. This led to additional testing and a diagnosis of Focal Segmental Glomerulosclerosis (FSGS), a rare genetic kidney disease. Later that year, her 25 year old son, Jorden, was also diagnosed with FSGS. This was shocking to the Albright Henighan family. How could they be at high risk of a disease that they had never heard of? They connected with Nephcure, a patient advocacy organization, for support and resources. They learned that 1 in 8 people of West African descent are at risk of APOL1 mediated FSGS due to a genetic mutation. Thanks to early detection, her sons are stable today but this is a rare outcome for FSGS patients due to a lack of education and barriers in the medical community. They decided to share their story across the United States and even in Ghana. Their goal is to educate and empower others. If caught early, there are medical interventions and clinical research trials that can save native kidneys and lives. There is hope for FSGS patients.

Resources Mentioned:

• Nephcure Kidney International: Advocacy and support for families affected by kidney diseases.
• Information on APOL1-mediated FSGS and genetic testing.
• Tips for recognizing early symptoms of kidney disease.

Connect with Us:

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

Guest Amy Raskin shares her experience parenting a child living with type 1 diabetes (T1D) and celiac disease. Amy shares her personal experiences, the challenges her family has faced, and the strategies they’ve developed to support her son Andrew’s health and well-being.

Amy Raskin is a pioneer in global thematic investing and widely respected as a bold thought leader. As the Chief Investment Officer of Chevy Chase Trust since February 1, 2014, she has propelled the firm to a leadership position in thematic investing, a small, but rapidly growing approach to investing that MSCI recently added to its universe of style categories. Under her leadership, Chevy Chase Trust has outperformed its global benchmark in each of the last nine years; it is in the top decile of managers for the last 10 years. Amy is also a monthly guest on CNBC.

Prior to joining Chevy Chase Trust, Amy was Senior Vice President at AllianceBernstein in New York, serving as Director of Research for Thematic Portfolios, Director of Research on Strategic Change, head of U.S. & Global Growth Equity Research and Chief Investment Officer of AB Venture Capital Fund. The Research on Strategic Change team published in-depth research papers on a wide range of thematic investment topics, such as broadband, China, hybrid vehicles, climate change and molecular medicine.

Earlier, she worked as an investment banker at Lehman Brothers and as a research analyst at Donaldson, Lufkin & Jenrette. Amy graduated from the University of Pennsylvania’s School of Engineering and Applied Science with a Bachelor of Science in Engineering. She currently serves on the Boards of UPenn’s Engineering School and of the T1D Fund, which is a venture capital fund focused on finding a cure to Type 1 diabetes.

Topics Covered:

• Understanding Type 1 Diabetes: What T1D is, how it differs from adult-onset diabetes, and the symptoms to look for.
• A Family’s Journey: Andrew’s diagnosis, the path to confirmation, and how the family adapted to his needs.
• Living with Celiac Disease: The symptoms, diagnosis, and how it intersects with managing T1D.
• Daily Life Adjustments: Modifying the home, navigating school and friendships, and encouraging independence.
• Sibling Dynamics: How Andrew’s older brother, Jason, has adjusted to the care and attention Andrew requires.
• Advice for Parents: Amy’s wisdom for families facing T1D, celiac, or other chronic conditions.

Key Moments:

• Amy discusses the emotional and practical aspects of explaining T1D to her children.
• Insights into managing dual diagnoses of T1D and celiac disease.
• Strategies for balancing a demanding career with the complexities of parenting a child with chronic health conditions.

Resources Mentioned:

• T1D Fund
• Camp Sweeney
• Break Through T1D
• Findmeglutenfree.com
• Hole In The Wall Gang Camp

Connect with Us:

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

Co-host Cathy Gildenhorn takes on the interviewer role to explore the personal story of her co-host, Beth Glassman. Beth shares her journey of living with a childhood autoimmune disease, offering insights into her diagnosis, its impact on her early life, and how it shaped her perspective as an adult.

On Episode #54, Beth interviewed Cathy about her journey to parenthood through infertility and adoption. Now, the roles are reversed as Cathy delves into Beth’s experiences, highlighting the challenges, lessons, and resilience that come from growing up with an autoimmune condition called uveitis.

Topics Covered:

• Diagnosis and Early Understanding: Beth’s initial diagnosis, symptoms, and how her healthcare providers and family explained the condition.
• Family and Social Dynamics: How her family responded to the diagnosis and whether Beth discussed her condition with friends, teachers, or counselors.
• Navigating Childhood and Adolescence: The impact of the disease on her education, sports, and ability to drive.
• Living with an Autoimmune Disease: Beth’s thoughts on the potential for passing the condition to her children and how her vision has changed over time.
• A Healthy Lifestyle: How her childhood experience influences her approach to health and wellness today.
• Advice for Parents: Beth’s guidance for parents raising children with health challenges.

Key Moments:

• Beth describes how her autoimmune disease affected her vision and how she explains it to others.
• The importance of open communication with family, friends, and educators about living with a chronic condition.
• Reflections on resilience and the power of support systems during childhood.

Connect with Us:

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.