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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 jball@rareconnection.org
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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

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