Rare Connection

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In this episode of Rare Connection, host Joanna speaks with Stephanie from the EveryLife Foundation for Rare Diseases, who shares her journey living with Idiopathic Intracranial Hypertension (IIH)—a rare neurological disorder involving increased pressure around the brain with no detectable cause.

Stephanie opens up about the long path to diagnosis, the life-altering symptoms of IIH, and how she eventually accessed treatment through an off-label use of a GLP-1 weight loss drug—a medication not FDA-approved for IIH, but one that is showing promise in reducing spinal fluid pressure in patients. She discusses the immense challenge of navigating insurance to access this treatment and what others might expect if considering a similar path.

In addition to sharing her personal health story, Stephanie discusses her powerful work as the program manager of the Rare Artist Program and Rare Disease Scholarship Program at the EveryLife Foundation. These initiatives uplift voices in the rare disease space through creativity and education, offering platforms for patients and caregivers to thrive.

🎯 In This Episode:

• What it’s like to live with Idiopathic Intracranial Hypertension (IIH)
• The role of GLP-1 medications in off-label treatment of IIH
• The fight to get off-label treatments covered by insurance
• How art and advocacy helped Stephanie regain purpose
• Ways to get involved in the Rare Artist Program and Rare Disease Scholarship

🔗 Links & Resources:

• EveryLife Foundation: https://everylifefoundation.org
• Rare Artist Program: https://rareartist.org
• Rare Disease Scholarship: https://everylifefoundation.org/rare-scholarship
• More on GLP-1 drugs and IIH: https://pmc.ncbi.nlm.nih.gov/articles/PMC10151178/

💬 Join the Conversation:

• Leave a comment on YouTube
• Or send Joanna a text using the link in the show notes!

📱 Follow Rare Connection:

• Facebook: https://www.facebook.com/profile.php?id=100095564621062
• X (formerly Twitter): https://x.com/Rare_Connection
• LinkedIn: Rare Connection Inc.  

🛒 Support the Show:

• Grab Rare Chef merch: https://www.bonfire.com/invisible-disability-rare-disease-awareness/
• Or click the Support the Show link in your podcast app

📞 Mental Health & Crisis Support:
If you're struggling, you are not alone:

• Call the Suicide & Crisis Lifeline at 988
• Or text HELLO to 741741 to reach the Crisis Text Line

Chapter Markers

00:00 Intro
00:44 Medical disclaimer
00:56 Introducing Stephanie
01:52 diagnosis story
02:33 Right eye goes lazy
02:58 Doctor orders MRI
03:10 Stephanie passes out
03:35 Spinal Tap
05:08 Diamox prescribed
05:46 Learning to adapt
07:50 Stephanie doesn't know when her symptoms started9:10 Undiagnosis
09:42 Burden of diagnostic challenge study

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In this powerful episode of Rare Connection, we meet Paul, the president of Cure CLCN6 and the father of Paxton, a young boy diagnosed with an ultra-rare visit mutation on the CLCN6 gene.

Paxton’s journey began with developmental delays and years of unanswered questions. After extensive genetic testing, his family finally received a diagnosis—one so rare that few doctors had even heard of it. Today, Paul is leading the charge to raise $1.5 million to fund a life-saving gene therapy that could offer Paxton a chance at a better future.

 Bisit cureclcn6.org for more information.  To donate click the following link to be taken to their Go Fund Me account.

  https://www.gofundme.com/f/donate-to-fund-paxtons-critical-gene-therapy?attribution_id=sl:c0d715d3-a026-4505-8dfa-52ec45d605f6&utm_campaign=man_sharesheet_dash&utm_medium=customer&utm_source=copy_link  Cure CLCN6 is a recognized 501c3  

If you are interested in purchasing one of my t-shirts click the link below for my bonfire account.  https://www.bonfire.com/invisible-disability-rare-disease-awareness/

Chapter Markers

00:00 Intro

03:17  Early signs

05:32 Paxton's diagnosis story

08:30 What to expect

12:01 Paxton's biggest challenges

15:06  Similarities & differences in CLCN6 gene

18:59 Inspiration for Cure CLCN6

26:17 How is Horae Chan Medical School helping rare disease families

28:50 How you can help?

34:17 What it would mean for Paul & his family to reach their goal

39:35 Speech therapy

40:10 Financial timeline

41:34 Advice for others

44:26 Biggest hopes for Paxton and other CLCN6 patients

48:33 Special diet?

51:24 Conclusion

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In this episode of Rare Connection, host Joanna speaks with Regina, a sarcoidosis patient, author, and creative advocate who’s transforming her personal health journey into a source of awareness and empowerment.

After her sarcoidosis diagnosis, Regina launched UniquelySarc, a handmade earring line dedicated to raising sarcoidosis awareness. She is the author of To Hell with Sarcoidosis and Other Illnesses and actively supports the rare disease community by moderating the AnCan sarcoidosis support group and leading a creative writing class to help others process their own journeys.

This conversation explores the power of creativity, self-expression, and community support in navigating life with a rare disease.

✅ In This Episode, You’ll Learn:

• Regina’s personal journey to a sarcoidosis diagnosis
• How art and writing became part of her healing
• The mission behind UniquelySarc and her book
• Why peer support groups are essential
• How creative outlets can help rare disease patients find their voice

💬 Stay Connected:

• Subscribe to Rare Connection wherever you listen to podcasts
• Follow Rare Connection on Facebook, X, and LinkedIn
• Text me: Reach out directly using the link in the show notes
• Subscribe to my YouTube channel: Rare Chef

🧠 Listener Bonus:

There’s a quiz based on Regina’s answers available in the Community tab on YouTube and in the show notes—test your knowledge and keep the conversation going!

⚠️ Medical Disclaimer:

This podcast is for educational and awareness purposes only and should not be used as medical advice. Always consult your healthcare provider for your individual medical needs.

💛 Suicide Prevention Resources:

If you or someone you know is struggling:

• Call or text 988 for the Suicide & Crisis Lifeline
• Text “HELLO” to 741741 to reach the Crisis Text Line

You are not alone. Help is always available.

Chapter Markers
OO:00 Intro
02:14 Regina's diagnosis story
04:28 Hospital finds mass on lungs
05:37 Nonhodgkins Lymphoma misdiagnosis 
08:04 Regina never looked up either Nonhodgkin's Lymphoma or Sarcoidosis
0936 Early signs
10:45 It took 4 years before Regina was diagnosed with Sarcoidosis
11:05 Regina lost 50 LBS
11:33 Regina is put on Steroids
12{18 The most surprising thing about living with Sarcoidosis
13:03 Changes over time.
14:06 Uniquely Sarc inspiration
15:51 Jewlery as a form of awareness
19:25 Regina's first commissioned order
20:26 Regina's Book "T0 Hell With Sarcoidosis and ohter conditions"
23:41 Wtiting class
25:42 Role of expression in processing illness
27:52 The Journey Of The Purple Snowflake
31:22 Advice for those who don't see themselves as creative
35:18 Sarcoidosis Support Group
38:26 New Drug trial
39:17 common struggles
41:02 compassion Patient progran
44:13 How Friends and Family can support people with sarcoidosis
46:26 advice to knewly diagnosed
47:58 conclusion

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In this special Rare Connection Live episode, host Joannal celebrates 2 years of amplifying rare voices by welcoming Serena, a rare disease advocate and parent from New Zealand.

Serena’s daughter lives with GLUT1 Deficiency Syndrome, a rare metabolic disorder that impairs glucose transport to the brain — leading to seizures and neurodevelopmental challenges. One of the most critical treatments? A clinically managed ketogenic diet, tailored specifically for medical use.

Together, we discuss:
 🧠 What GLUT1 Deficiency is and how it’s diagnosed
 🥣 How the medical ketogenic diet supports brain energy metabolism
🌍 Differences in access and support between New Zealand and the U.S.
🏫 Serena’s work supporting new families through Starship Hospital and advocating for rare children in schools
📜 The ongoing fight to pass the Medical Nutrition Equity Act in the U.S.

Whether you’re a clinician, parent, caregiver, or advocate — this episode offers critical insights into the lived experience and nutritional treatment of GLUT1 DS.

📌 Note: This conversation is for informational purposes only and should not be used as medical advice. Always consult a qualified healthcare provider.

🔗 Support the Show: [Insert support link]
📲 Follow Rare Connection on Facebook, X, and LinkedIn
🎧 Subscribe to the podcast and to Joanna’s YouTube channel, Rare Chef, for more rare disease stories 

00:00 intro
01:52 Glut 1 explained
12:13 early signs
13:36 care comparison around the world
14:46 Health care and education subsidies in New Zealand
15:51 Medical Keto diet
17:38 Medical foods and  Medical formula
20:34 Consequences if an untrained nanny
22:02 Diabetes vs Glut 1
30:49 Challenges and misconceptions
34:18 Serena's work with new parents at Starship Hospital
46:05 Keto yogurt recipe
49:27 Hopes for Education system in New Zealand
54:42 Global Disability Summit
58:38 Good/ bad days for disabilities
01:02:39 self care
01:04:13 How Georgia helps
01:05:56 Community
01:11:36 Food based treatment vs medications
01:13:27 Lessons from Georgia
01:14:43 Advice for new parents
01:15:17 Listener support
01:15:55 Conclusion

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In this episode of Rare Connection, host Joanna sits down with Tami — a teacher, advocate, and mother of 7-year-old Jonathan, who lives with a rare ANK3-related disorder. Tami shares her family's diagnostic journey, how Jonathan's multiple conditions impact their daily life, and how she balances caregiving with her work in early childhood education.

We discuss:

• Jonathan’s rare disease diagnosis and overlapping conditions (including hypotonia, autism, ADHD, and more)
• The emotional and logistical challenges of raising a child with multiple complex needs
• Tami’s insights as a teacher working with children ages 6 weeks to 5 years old
• Feeding and nutrition struggles, sensory issues, and strategies that help
• The power of advocacy and community support
• Tami’s involvement with Wichita’s Littlest Heroes, Meaningful Life Foundation, and Challenge Games

Whether you're a parent, caregiver, educator, or rare disease advocate, this episode offers insight, encouragement, and practical wisdom.

🔗 Links & Resources

• Wichita’s Littlest Heroes: https://www.wichitaslittlestheroes.com
• Meaningful Life Foundation: https://www.meaningfullifefoundation.com
• Challenge Games: https://www.challengegames.org
• Join the Rare Connection Facebook Group: [Facebook Group Link]
• Support the Show: [Your Buzzsprout “Support the Show” link]
• Send Me a Text: [Your “Send Me a Text” link]

👕 Shop Awareness Merch

Check out the t-shirt I designed to raise awareness for invisible disabilities and rare diseases — available for worldwide shipping: [Bonfire merch link]

📱 Follow & Subscribe

• YouTube: Rare Chef
• Podcast: [Rare Connection]
• Facebook, X, LinkedIn: @RareConnection

🧠 Mental Health Support

If you or someone you know is struggling, call or text 988 for the Suicide & Crisis Lifeline — available 24/7 in the U.S.

In this episode of Rare Connection, host Joanna sits down with Tami — a teacher, advocate, and mother of 7-year-old Jonathan, who lives with a rare ANK3-related disorder. Tami shares her family's diagnostic journey, how Jonathan's multiple conditions impact their daily life, and how she balances caregiving with her work in early childhood education.

We discuss:

Jonathan’s rare disease diagnosis and overlapping conditions (including hypotonia, autism, ADHD, and more)

The emotional and logistical challenges of raising a child with multiple complex needs

Tami’s insights as a teacher working with children ages 6 weeks to 5 years old

Feeding and nutrition struggles, sensory issues, and strategies that help

The power of advocacy and community support

Tami’s involvement with Wichita’s Littlest Heroes, Meaningful Life Foundation, and Challenge Games

Whether you're a parent, caregiver, educator, or rare disease advocate, this episode offers insight, encouragement, and practical wisdom.

🔗 Links & Resources
Wichita’s Littlest Heroes: https://www.wichitaslittlestheroes.com

Meaningful Life Foundation: https://www.meaningfullifefoundation.com

Challenge Games: https://www.challengegames.org

Join the Rare Connection Facebook Group: [Facebook Group Link]

Support the Show: [Your Buzzsprout “Support the Show” link]

Send Me a Text: [Your “Send Me a Text” link]

👕 Shop Awareness Merch
Check out the t-shirt I designed to raise awareness for invisible disabilities and rare diseases — available for worldwide shipping: [Bonfire merch link]

📱 Follow & Subscribe
YouTube: Rare Chef

Podcast: [

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🧠 Mental health is rarely optional when you're living with a rare disease. Join Joanna, host of Rare Connection, for a powerful live conversation with Frank, a rare disease patient and mental health advocate who's working to make support more accessible for our community.

🌍 Living with sarcoidosis and other chronic conditions, Frank brings a deeply personal and professional perspective. He recently moderated a panel on mental health at the World Orphan Drug Congress USA and is now leading efforts to help rare disease patients find affordable, qualified mental health care providers.

📊 Did you know?

• 75% of rare disease patients report symptoms of anxiety
• Over 66% experience depression
• Many are bullied, misunderstood, or feel completely alone

🎧 In this live episode, we’ll explore:

• How rare diseases impact mental health
• Why so many patients feel dismissed or isolated
• What it will take to get emotional support to those who need it most
• How YOU can help push for mental health equity in rare care

💬 Ask questions live in the chat, and be part of this important conversation.

🔔 Subscribe to Rare Chef so you don’t miss the live broadcast or future episodes.

📌 Resources & links will be available in the video description after the stream.
📲 For audio listeners, check your show notes to send me a text or support the show.

📣 Let’s break the silence around rare disease and mental health. See you live!

#RareConnection #RareDisease #MentalHealthMatters #Sarcoidosis #RareChef #PatientAdvocacy #YouAreNotAlone

hapter Markers

00:00  Intro
03:21 Biggest challenges Mental health patients face Both Physically& emotionally
06:31 Anxiety and waiting on results
09:08 Parent of a nonverbal child doesn;t know if the child is in pain or distress
15:17 Medical Gass lighting
18:58 Balancing Fear & hope
21:10 Damage of negative thoughts over time 
24:17 Barriers & progress to affordable mental health
29:32 Informational resources on Rare diseases
40:51 Suicide Attempt
42:48 supporting the effort to make mental health accessable in rare disease
47:32 conclusion

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In this episode, I sit down with Brenda, a woman navigating the challenges of a painful, disabling, and unnamed orphan disease. Despite testing negative for VEXAS, relapsing polychondritis, and MAGIC syndrome, Brenda continues to suffer from spontaneous tendon tears and systemic inflammation. One key clue? She is HLA-B27 positive, a genetic marker linked to certain autoimmune conditions — but her exact diagnosis remains elusive.  

💡 In this episode, you’ll learn:

• What HLA-B27 is and why it matters in autoimmune diagnosis
• How spontaneous tendon ruptures can signal a deeper immune issue
• What it’s like to live with a disease that has no name
• Why orphan disease patients often go years without answers
• How Brenda is advocating for herself and others despite uncertainty
• Where to find support and resources for HLA-B27–associated conditions

Stay Tuned for a quiz at the end of the episode.  Test Your knowledge Play with friends and compete to see who gets the most answers right.  Answers will be video only on my socials.  See below

🔔 Subscribe for more interviews with patients, advocates, and experts from the rare disease community!
👍 Like, Comment, and Share to support rare voices.
📩 Text me directly with your thoughts or questions: [Insert your link here]

🔗 Connect with me:
🌐 Website: rareconnection.org
📘 Facebook: [Rare Connection Facebook]
🐦 X (Twitter): [@Rare_Connection]
💼 LinkedIn: [Rare Connection Inc. or Joanna Ball]
🍳 Subscribe to my YouTube channel: [Rare Chef]

⚠️ Medical Disclaimer:
This podcast is for informational purposes only and should not be considered medical advice. Always consult a qualified healthcare professional before making any changes to your health or treatment plan.

💙 Mental Health Resources
If you're struggling, you're not alone. Help is available 24/7.
📞 In the U.S., dial 988 or text HELLO to 741741.

00:00 intro
02:53 Diagnosis story
05:32 Early Symptoms and medications attempted
08:55 Medical Gas Lighting
12:10 suit of Armor
13:38 PRP & Stem Cell
14:05 Anti-Inflammatory diet
18:37 Blood Test for HLAB27
20:45 Doctors theory  (sinus infection that triggered the gene
22:00 The Name doesn't matter
25:50 how doctors ruled out other conditions
31:32 specialists involved in care
33:00 Travel For Care
37:29 the little things
45:44 Advice for others
48:45 conclusion
51:28 HLAB27 quiz

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In this episode of Rare Connection, host Joanna Ball speaks with [Guest Name], who shares their powerful journey with [Rare Disease]. Together, they discuss diagnosis challenges, treatment paths, daily life, and advocacy work. Whether you're a patient, caregiver, medical professional, or just curious—this conversation brings rare insight into a rarely understood condition.

💡 New! Listener Quiz
Stick around to test your knowledge with a short quiz at the end of the episode! It's a great way to stay engaged, especially with our new premium content rolling out soon on Apple Podcasts.

📺 Watch & Subscribe
This episode is available on YouTube at Rare Chef, Joanna’s advocacy and cooking channel. All content will now be posted here instead of TikTok Live, as live streaming has been paused due to age verification delays.

📲 Follow Joanna Online

• YouTube: Rare Chef (subscribe for full episodes & Shorts)
• TikTok: @joannaball1 (Shorts only; no livestreams)
• Facebook: Joanna Ball
• LinkedIn: Joanna Ball or Rare Connection Inc.
• X (Twitter): Rare Connection Inc.

👕 Support the Show Through Merch!
Get a shirt from our Bonfire shop under Rare Chef—with designs for Rare Connection, Rare Chef, and invisible illness awareness. Proceeds help fund groceries for Joanna’s cooking videos and keep the channel going.

🎧 Premium Episodes
Some episodes may appear as premium audio on Apple Podcasts for $3, but older episodes will remain free. Your support keeps rare stories heard.

💬 Want to help?

• Use the Support the Show link in the audio show notes
• Comment on the YouTube video to keep the conversation going

⚠️ Disclaimer: All content is for educational and awareness purposes only. Always consult a qualified medical professional for health decisions. Please do not offer medical advice in the comments—even if you're a healthcare professional.

🧠 Suicide Prevention Resources

• Call or text 988
• Text HOME to 741741 (Crisis Text Line)

Chapter Markers

00:00 Intro
01:56 Early Signs
04:22 Loss of mobiliy
08:20 Nicki becomes bedbound
09:20 Plasma Pheresis
0:11:28 Neuromyolitis Optica VS Multiple Sclerosis
0:13:29 Nicki otfrts her medical records
0:15:03 Nick has had Asthma her entire Life
00:16:17 Dysplasia
0:18:57 Debicks Disease ( another name for NMO)
0:19:39 Nicki looks for community
0:21:22 MS Drugs can make NMO worse
0:22:53 You can have NMO and not have the antibody
0:23:33 The Sumaira Foundation (TSF) nonprofit for NMO
0:24:45 Advocacy
0:33:03 Vision on a daily basis
0:37:00 Heat triggers symptoms
0:39:55 Stztistics NMO
0:42:13 genetics
0:44:00 Lingering symptoms
0:48:00 Treatments that help Nicki stay Relapse free
0:50:16 Self care
0:59:42 Turning points
1:01:46 boumdaries
1:04:56 Getting involved with the Simari foundation
1:07:06 managing the ambassador program for The Sumaira Foundation
1:08:46 comferences
1:10:10 Travel for care
1:12:30 favoriye projects with the Sumaira Foundation
1:15:21 What you should know
1:17:46 Srarting treatment for MS filters antibodies out
1:18:42 myths and Misconceptions
1:19:10 difference between the 2 tests for NMO
1:20:10 coping during difficult times
1:22:46 acceptance
1:24:31 diet
1:26:33 Advice for newly diagnosed
1:27:42 What NMO has taught Nicki
1:29:09 Conclusion
1:33:15 nmo quiz

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In this milestone 50th episode of Rare Connection, host Joanna sits down with Jenny, the powerful voice behind the blog Life’s A Polyp. Diagnosed with Familial Adenomatous Polyposis (FAP) as a child, Jenny underwent a total colectomy at age 9, followed by a series of life-threatening complications that led to multiple surgeries, an ileostomy, a reversal, and eventually the diagnosis of Short Bowel Syndrome (SBS) — one of the conditions covered in the proposed Medical Nutrition Equity Act (MNEA).

Jenny opens up about:

• Her early diagnosis with FAP and its impact on her childhood
• Coping with surgical trauma and living with medical PTSD
• Her ileostomy and pull-through procedures
• Life with Short Bowel Syndrome and daily nutritional challenges
• The importance of access to medical foods and legislative change through the MNEA
• Advocating through her blog and building community for others with rare GI conditions
• Finding diagnosis for a lesser-known condition: abdominal migraines

Jenny’s story is raw, insightful, and a powerful reminder of why visibility for invisible illnesses matters.

📌 Connect with Jenny:
🔗 Blog: Life’s A Polyp

📲 Join the Conversation & Support the Show

💬 Comment on this episode:

• Watching on YouTube? Comment below!

👕 Wear your advocacy: Order our new Rare Disease & Invisible Disability Awareness t-shirt — ships worldwide! Only $24.99 + shipping. [Link in show notes]

https://www.bonfire.com/invisible-disability-rare-disease-awareness/

📱 Follow Rare Connection:

• Facebook Group:https://www.facebook.com/groups/3802022513417876 
• Facebook Page:https://www.facebook.com/profile.php?id=100095564621062 
• X (Twitter): https://x.com/Rare_Connection
• LinkedIn: https://www.linkedin.com/company/rare-connection-inc
• YouTube Channel:https://www.youtube.com/@Rare_Chef

🧠 Mental Health & Suicide Prevention
If you’re struggling, you're not alone.
📞 Call 1-800-273-TALK (8255) or
📱 Text 988 for free, 24/7 support in the U.S.

Chapter Markers

00:00 Intro
03:16 Diagnpsis story
05:03 Family Connection
05:50 Early memeories
09:31 J pouch
10:23 ostomy bag covers
11:09 FAP
12:38 Long Term Effects of FAP
14:21 Genetic Testing
15:21 short bowel syndrome
17:34 Medical Nutrition
18:30 Insurance denials
23:23 Importance of equitable access to medical nutrition
24:34 Navigating the system
25:43 Life's A Polyp blog
27:54 Health union formerky We Go Health
30:23 What Keeps Jenny Going
32:32 If the Medical Nutrution Equity Act were passed
34:28 Oklahona Doesn't cover Medical, Foods, or Formula
36:00 conclusion

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In this episode of Rare Connection, I sit down with Ben, a rare disease researcher and advocate with over 15 years of experience in cell and molecular biology, clinical research, and leadership. Ben shares his personal journey living with lymphocytic colitis and oral lichen planus—two often misunderstood conditions—and his professional insights from working on projects like the CoRDS Rare Disease Registry and the Experimental Therapeutics Screening Facility at Sanford Research.

We talk about his path into research, how rare and overlooked diseases are studied, and the realities of living with chronic and invisible illnesses. We also touch on the importance of access to medical nutrition and support for rare disease patients.

This conversation is for educational and informational purposes only and should not be considered medical advice. Always consult your healthcare provider for personal medical care.

✨ Rare Connection is available on YouTube and wherever you get your podcasts! Follow us on Facebook, X (formerly Twitter), LinkedIn, and join our private Facebook group for more rare disease community support.

💬 Comment below or send me a text through the link in the show notes if you want to connect!

🛒 Check out our new Invisible Disability Awareness t-shirt on Bonfire, combining the sunflower (for invisible disabilities) and the zebra (for rare diseases)! Link in the description.  https://www.bonfire.com/invisible-disability-rare-disease-awareness/

❤️ If you’d like to support the show financially, there’s also a 'Support the Show' link in the show notes.

📞 If you or someone you know is struggling, help is available.

• Call or text the Suicide and Crisis Lifeline at 988
• Text HOME to 741741 to reach a trained crisis counselor.

Thank you for being part of Rare Connection!

#RareDisease #InvisibleDisability #PatientAdvocacy #LymphocyticColitis #OralLichenPlanus #RareConnection #RareChef

Chapter Markers

0:00:00 Intro
0:02:17 Diagnosis story Lymphocytic Colitis
0:04:59 Steroid Treatment
0:07:52 Oral Lichen Planus Diagnosis
0:10:30 Researcher self employed
0:13:10 Medical experience
0:15:42 Physician Compassion
0:18:17 Clinical Research and Healthcare Delivery
0:23:21 CORDS Rare Disease Registry
0:27:23 Rare-X
0:32:40 Rare Disease Naming
0:36:27 Disease Patterns
0:40:14 what researchers should know
0:45:55 Why doctors are discouraged from going outside their specialty
0:48:57 Family support
0:51:13 Advocacy
0:52:33 community
0:55:33 Statistical information varies by location
1:00:00 Leaky gut syndrome
1:04:24 diet, disease, location, & cost
1:06:00 Medical Nutrition Equity Act
1:10:28 Myths & Misconceptions
1:13:42 What gives ben hope
1:16:39 Changes Ben would like to see in the next 5 years
1:21:25 Our Oddessy
1:22:16 Remember The Girls
1:23:41 age &rare disease
1:25:49 conclusion

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