Send us Fan Mail

In this episode of Rare Connection, Joanna sits down with Rori, Vice President of the Superficial Siderosis Research Alliance (SSRA), to explore the complexities of Superficial Siderosis (SS), a rare and progressive neurodegenerative condition. Together, they discuss:

• The causes, symptoms, and diagnostic challenges of SS.
• Current treatments like chelation therapy and the role of dietary considerations.
• The vital work of the SSRA in advancing research and supporting patients.
• The ongoing challenges of funding rare disease advocacy and research.

Whether you're living with SS, supporting a loved one, or simply curious about rare conditions, this episode shines a light on the importance of awareness, advocacy, and community.

👥 Guest Information:

• Rori: Vice President of the Superficial Siderosis Research Alliance
• Learn more about SSRA: SSRA.livingwithSS.org

🌟 Key Takeaways:

• Understanding Superficial Siderosis: SS is caused by chronic bleeding into the brain or spinal cord, leading to iron buildup and damage to the nervous system.
• Symptoms and Diagnosis: SS can present as hearing loss, ataxia, or cognitive changes, and is often misdiagnosed due to its rarity.
• Treatment Options: Chelation therapy can help remove iron buildup, but early diagnosis is critical for managing symptoms.
• The Role of Advocacy: SSRA connects patients, raises awareness, and drives research forward, highlighting the importance of collective effort in rare disease spaces.

📝 Episode Links & Resources:

• Donate to the SSRA: SSRA.livingwithSS.org
• Connect with Rare Connection:
  • Website: rareconnection.org 
  •  I am currently trying to turn Rare Connection into a Nonprofit and I need governing board members.  Time commitment approximately 20 Hours a week.  This is a volunteer job, so you won't be paid,  I am looking for a secretary to take meeting minutes, lead the outreach committee as we grow, help with organization and newsletters, and the email list.   I also need a treasurer, who is responsible for the financial end of things, budgeting, and leading the fundraising committee as we grow.  Meeting time included in estimate.  1 to 2 hours a month  committee time estimated  between 2 and 4 hours, but it will take time to get that started.  if interested email me at [email protected]
• I am looking to collaborate with medical professionals to offer CE Credits, if you are interested in showing my podcast in your classroom and offering CE credits for it please let me know.  All guests are encouraged to bring visuals on to the visual part of this podcast.  

Lastly, I am looking for sponsors if you are interested in sponsoring the show please reach out to me at [email protected]  anything you can give will help.  Click the link below to help:

https://www.buzzsprout.com/2204433/support

• Facebook: https://www.facebook.com/groups/3802022513417876
• Twitter: https://x.com/Rare_Connection

🔔 Subscribe & Support:
If you enjoyed this episode, please subscribe to Rare Connection and leave a review! Your support helps us continue raising awareness for rare diseases and sharing the voices of incredible advocates like Rori.

Chapter Markers

0:00:00 Intro
0:01:28 Superficial Siderosis explained
0:04:56 How Superficial Siderosis differs from MS
0:07:28 How Rori Communicates with Gary
0:07:55 diagnosis
0:12:41 Chelation Therapy (off label Treatment for Superficial Siderosis)
0:16:37 How Superficial Siderosis is aquired
0:18:49 3 Variants of SS
0:22:46 MIND diet
0:26:24 How much iron is recommended
0:27:50 G

Support the show