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	<title>Living With Superficial Siderosis</title>
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	<title>Living With Superficial Siderosis</title>
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		<title>FDA Grant Application to Advance Superficial Siderosis Research</title>
		<link>https://livingwithss.com/grant-application/</link>
					<comments>https://livingwithss.com/grant-application/#comments</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Wed, 26 Nov 2025 05:00:43 +0000</pubDate>
				<category><![CDATA[Research]]></category>
		<category><![CDATA[clinical trial]]></category>
		<category><![CDATA[medical research]]></category>
		<category><![CDATA[natural history study]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=23068</guid>

					<description><![CDATA[A MAJOR MILESTONE FROM THE SSRA MEDICAL AND SCIENTIFIC ADVISORY COMMITTEE Pushing the Boundaries of Rare Disease Research This month marks a major moment for the Superficial Siderosis Research Alliance (SSRA) and everyone who supports the fight against superficial siderosis (SS). After weeks of intense collaboration and review, the SSRA Medical Advisory Committee officially submitted an FDA research &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/grant-application/feed/</wfw:commentRss>
			<slash:comments>1</slash:comments>
		
		
			</item>
		<item>
		<title>NORD Living Rare Study</title>
		<link>https://livingwithss.com/nord-living-rare-study/</link>
					<comments>https://livingwithss.com/nord-living-rare-study/#respond</comments>
		
		<dc:creator><![CDATA[Wes Hale]]></dc:creator>
		<pubDate>Tue, 30 Sep 2025 21:03:09 +0000</pubDate>
				<category><![CDATA[Research]]></category>
		<category><![CDATA[NORD]]></category>
		<category><![CDATA[rare disease]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=23053</guid>

					<description><![CDATA[The Superficial Siderosis Research Alliance is a member of the National Organization of Rare Disorders (NORD). The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in policy, research, and care. The Orphan Drug Act defines a rare disease as a disease or condition that affects &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/nord-living-rare-study/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
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		<title>Best Hearing Aids for 2025</title>
		<link>https://livingwithss.com/best-hearing-aids-for-2025/</link>
					<comments>https://livingwithss.com/best-hearing-aids-for-2025/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Mon, 15 Sep 2025 18:54:38 +0000</pubDate>
				<category><![CDATA[Hearing]]></category>
		<category><![CDATA[Hearing Aids]]></category>
		<category><![CDATA[Hearing Loss]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=23023</guid>

					<description><![CDATA[Hearing Aids for Sensorineural Hearing Loss A few weeks ago, we received an email asking for advice on which hearing aids were the best. Superficial siderosis hearing loss is one of the most common and challenging symptoms of this rare neurological condition. Over 90% of patients experience progressive sensorineural hearing loss, often reaching severe or &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/best-hearing-aids-for-2025/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
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		<title>Charting a New Course for Superficial Siderosis</title>
		<link>https://livingwithss.com/charting-a-new-course-for-superficial-siderosis/</link>
					<comments>https://livingwithss.com/charting-a-new-course-for-superficial-siderosis/#comments</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Tue, 15 Jul 2025 10:30:00 +0000</pubDate>
				<category><![CDATA[Research]]></category>
		<category><![CDATA[research roundtable]]></category>
		<category><![CDATA[superficial siderosis research]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22980</guid>

					<description><![CDATA[Superficial Siderosis Symposium Research Roundtable On June 13, 2025, the final morning of the Superficial Siderosis Symposium, a group of experts on superficial siderosis and audience members gathered for the research roundtable. They set out to answer a deceptively simple question: What has to happen next so we can finally slow, stop, or even prevent &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/charting-a-new-course-for-superficial-siderosis/feed/</wfw:commentRss>
			<slash:comments>2</slash:comments>
		
		
			</item>
		<item>
		<title>Understanding Neurological Reserve</title>
		<link>https://livingwithss.com/understanding-neurological-reserve/</link>
					<comments>https://livingwithss.com/understanding-neurological-reserve/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Sat, 12 Jul 2025 01:11:46 +0000</pubDate>
				<category><![CDATA[Neurological Reserve]]></category>
		<category><![CDATA[Chronic Fatigue]]></category>
		<category><![CDATA[cognition]]></category>
		<category><![CDATA[neurological reserve]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22964</guid>

					<description><![CDATA[Why It Matters for Superficial Siderosis Suppose you live with superficial siderosis (or care for someone who does). In that case, you may have read on livingwithss.com the term neurological reserve, but what does that mean, and why is it such an essential part of managing life with SS? Think of your neurological reserve like &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/understanding-neurological-reserve/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>Welcome Rachel Kenner, New Editor of Living With Superficial Siderosis</title>
		<link>https://livingwithss.com/new-editor-of-living-with-superficial-siderosis/</link>
					<comments>https://livingwithss.com/new-editor-of-living-with-superficial-siderosis/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Sun, 22 Jun 2025 18:26:02 +0000</pubDate>
				<category><![CDATA[News]]></category>
		<category><![CDATA[livingwithss.com]]></category>
		<guid isPermaLink="false">https://ssra.livingwithss.com/?p=8298</guid>

					<description><![CDATA[Living With Superficial Siderosis began in 2014 as one small corner of the internet where Gary and I could make sense of two words that had suddenly turned our world upside down: superficial siderosis. Back then, my goal was simple: keep a running journal of Gary’s appointments, the new research I stumbled across, and the &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/new-editor-of-living-with-superficial-siderosis/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>Ask the Experts: Superficial Siderosis Q&#038;A Panel</title>
		<link>https://livingwithss.com/ask-the-experts-superficial-siderosis-qa-panel/</link>
					<comments>https://livingwithss.com/ask-the-experts-superficial-siderosis-qa-panel/#comments</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Mon, 02 Jun 2025 20:35:07 +0000</pubDate>
				<category><![CDATA[Live Event]]></category>
		<category><![CDATA[Q&A]]></category>
		<category><![CDATA[symposium]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22918</guid>

					<description><![CDATA[A Rare Opportunity to Ask Questions About Superficial Siderosis in Real Time If you&#8217;ve ever wanted to ask a leading neurologist or medical expert a question about superficial siderosis, this is your moment. On Thursday, June 12, during Patient Day at the Superficial Siderosis Research Alliance Symposium in Cambridge, Massachusetts, we’re hosting a live Q&#38;A &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/ask-the-experts-superficial-siderosis-qa-panel/feed/</wfw:commentRss>
			<slash:comments>4</slash:comments>
		
		
			</item>
		<item>
		<title>Superficial Siderosis Care</title>
		<link>https://livingwithss.com/superficial-siderosis-care/</link>
					<comments>https://livingwithss.com/superficial-siderosis-care/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Sun, 11 May 2025 11:00:15 +0000</pubDate>
				<category><![CDATA[Perspective]]></category>
		<category><![CDATA[healthcare]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22900</guid>

					<description><![CDATA[Accessing Specialist Care in the United Kingdom There are significant differences between the United Kingdom and the United States in how superficial siderosis is diagnosed, referred to, and treated. In the United Kingdom, patients must first consult their local general practitioner (GP) or neurologist within their regional NHS Trust. A referral is required to see &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/superficial-siderosis-care/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
			</item>
		<item>
		<title>CT Myelography in Superficial Siderosis</title>
		<link>https://livingwithss.com/ct-myelography-in-superficial-siderosis/</link>
					<comments>https://livingwithss.com/ct-myelography-in-superficial-siderosis/#comments</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Wed, 07 May 2025 13:48:15 +0000</pubDate>
				<category><![CDATA[Education]]></category>
		<category><![CDATA[ct myelogram]]></category>
		<category><![CDATA[dural leak]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22885</guid>

					<description><![CDATA[Advancements in Detecting Dural Leaks In superficial siderosis, a common cause of bleeding is a defect or tear in the spinal dura, the protective layer surrounding the spinal cord. These defects often cause slow, hard-to-detect cerebrospinal fluid (CSF) leaks. Finding the source of a leak is critical to stopping further bleeding and limiting damage to &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/ct-myelography-in-superficial-siderosis/feed/</wfw:commentRss>
			<slash:comments>1</slash:comments>
		
		
			</item>
		<item>
		<title>Finding Harmony Through Challenge: Mikko Pettinen’s Story</title>
		<link>https://livingwithss.com/finding-harmony-through-challenge-mikko-pettinens-story/</link>
					<comments>https://livingwithss.com/finding-harmony-through-challenge-mikko-pettinens-story/#respond</comments>
		
		<dc:creator><![CDATA[Rori Daniel]]></dc:creator>
		<pubDate>Mon, 31 Mar 2025 03:58:17 +0000</pubDate>
				<category><![CDATA[Personal Stories]]></category>
		<category><![CDATA[superficial siderosis profiles]]></category>
		<guid isPermaLink="false">https://livingwithss.com/?p=22859</guid>

					<description><![CDATA[A Life Shaped by Music In the heart of Helsinki, where jazz fills the air and creativity thrives, trumpeter and composer Mikko Pettinen has long made his mark on Finland’s vibrant music scene. A seasoned performer with the UMO Helsinki Jazz Orchestra and leader of soul and jazz ensembles like Funky Finns and Why Not, &#8230;]]></description>
		
					<wfw:commentRss>https://livingwithss.com/finding-harmony-through-challenge-mikko-pettinens-story/feed/</wfw:commentRss>
			<slash:comments>0</slash:comments>
		
		
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