Superficial Siderosis Research Alliance

Superficial Siderosis Research Alliance Living with Superficial Siderosis™ is the digital information publication of the Superficial Siderosis Research Alliance.

The SSRA is a 501(c)(3) nonprofit whose mission is advocacy, education, and fundraising for medical research.

02/28/2026

Every year on the last day of February, awareness is raised for all babies, children, youngsters and adults diagnosed with a rare condition

At morrello, and especially our paediatric branch, morrello mini, we support several families who are affected by a rare condition.
In recent years, genetic testing has ensured that many children have received the correct diagnosis, enabling the people around them to support them in the best way possible.

Our paediatric therapists work with many babies and children with a variety of syndromes as well as spinal muscular dystrophy.

They are all inspirational and we want them and their families to know that we see them 💜

Rare Disease Day is a reminder that “rare” doesn’t mean small. It means too many people are still searching for answers,...
02/28/2026

Rare Disease Day is a reminder that “rare” doesn’t mean small. It means too many people are still searching for answers, support, and effective treatments.

At the Superficial Siderosis Research Alliance, we exist for the patients and families living with Superficial Siderosis. This rare neurological condition can steal hearing, balance, mobility, and so much more. We’re working to change that through research, clinical collaboration, and patient education.

Today, we in the Superficial Siderosis community stand with the entire rare disease community:

To raise awareness
To speed up diagnosis
To fund research that leads to real therapies
To ensure no family feels alone

If you want to help, you can share this post and start a conversation, begin today, and keep the dialogue going every day!

02/28/2026

This Rare Disease Day (today - 28 Feb 2026) together with Genetic Alliance UK , we're calling on the governments of the UK deliver and:

1. Deliver a UK-wide map of rare conditions – The four UK nations must urgently fund comprehensive rare condition registries and work in partnership to map all 7,000 rare conditions.

2. Close the evidence gap through fair research investment – Government and research funders must correct the imbalance in research investment and reform evidence standards to recognise that uncertainty is inherent to rare conditions.

3. Mandate system-wide accountability for rare conditions – Healthcare systems must stress-test policies and commissioning decisions against the realities of low-prevalence conditions, including systematic auditing to identify gaps.

4. Embed rare conditions into mainstream healthcare delivery – Current UK healthcare reforms present an opportunity to fully integrate rare condition care into routine service provision.

5. Commit to a bold successor to the UK Rare Diseases Framework – UK governments must commit to a long-term successor with clear targets, adequate funding, and measurable improvements.

Learn more about the recommendations in the policy report: 'Equity for Rare: Delivering fairer healthcare systems for people with rare conditions' here: https://bit.ly/4u2EZHl

Every year, after the excitement of Black Friday and Cyber Monday, comes a day dedicated to giving back: Giving Tuesday....
11/29/2025

Every year, after the excitement of Black Friday and Cyber Monday, comes a day dedicated to giving back: Giving Tuesday. Launched in 2012, Giving Tuesday began as a simple idea. A global movement encouraging generosity, kindness, and community impact. For nonprofits like the Superficial Siderosis Research Alliance, it’s more than just a fundraising day; it’s a lifeline of hope.

Discover how the Superficial Siderosis Research Alliance (SSRA) is turning Giving Tuesday generosity into groundbreaking rare disease research, patient support, and advocacy progress.

This submission isn’t just a step forward. It’s a leap; the result of dedication, teamwork, and the shared belief that r...
11/26/2025

This submission isn’t just a step forward. It’s a leap; the result of dedication, teamwork, and the shared belief that rare disease research deserves the same urgency and attention as any other condition.

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 inte...

Uriel Chaim Goldberg, Ph.D., was a gifted scientist, an innovative engineer, and a man of quiet integrity whose final ac...
10/14/2025

Uriel Chaim Goldberg, Ph.D., was a gifted scientist, an innovative engineer, and a man of quiet integrity whose final act of generosity will continue to advance the understanding of Superficial Siderosis

1951 – 2025

10/09/2025

Please consider donated to Rachel Kenner's fundraiser for her birthday. Your contribution will make an impact, whether you donate $5 or $500, for our continued efforts to research and better understand the complicated condition that is Superficial Siderosis. We continue to give thanks for your support.
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OUR MISSION is education, advocacy, and seeking funding support for all superficial siderosis medical research for the benefit of every person affected by this ultra-rare neurodegenerative disorder. The Superficial Siderosis Research Alliance (SSRA) is a volunteer organization run by patients, caregivers, and friends dedicated to raising awareness, supporting medical research, and providing resources for those affected by this ultra-rare neurodegenerative disorder.

Send a message to learn more

Superficial Siderosis Patients & Caregivers – We Need Your Voice!
09/30/2025

Superficial Siderosis Patients & Caregivers – We Need Your Voice!

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.....

A fantastic and interesting day yesterday at the Welsh Government Event on medical research at the Senedd (Parliament). ...
09/24/2025

A fantastic and interesting day yesterday at the Welsh Government Event on medical research at the Senedd (Parliament).

Well done Mikko 👏🏻. A fantastic achievement, especially for someone living with superficial siderosis.
09/23/2025

Well done Mikko 👏🏻. A fantastic achievement, especially for someone living with superficial siderosis.

Here is an English translation of the yesterday’s 5 star-review of our album Patient Patient:
Thank you Marita Nyrhinen @ Kulttuuritoimitus

”A Composed Medical Story That Moves You — Review of Mikko Pettinen Why Not’s Patient Patient
5 Stars!
By Marita Nyrhinen
22nd September 2025

Mikko Pettinen Why Not: Patient Patient
Eclipse Music, 2025

Composer, trumpeter and multi-instrumentalist Mikko Pettinen has a long career behind him. He commands many musical styles with confidence — from subgenres of jazz to soul, funk, hip hop and more. In addition to his own projects, he has played with UMO and in the Finnish-Benin afrobeat and funk ensemble Helsinki-Cotonou. He also sings, plays keyboards, and creates various soundscapes using effects.
The band Mikko Pettinen Why Not was founded in 2018, and its musicians — Joakim “Jusu” Berghäll (baritone saxophone, bass clarinet), Vesa Ojaniemi (bass), and Tuomas Timonen (drums) — are as multi-talented as Pettinen himself. The quartet’s previous release, Two Suites For The Change (2020; see Erik Ahonen’s review in Kulttuuritoimitus) earned well-deserved praise. Now Mikko Pettinen Why Not has released a truly touching album in Patient Patient (Eclipse Music, 2025).

Pettinen’s journey toward this new album has been exceptional. Some time ago, he was diagnosed with a rare condition that leads to hearing loss. The path from the diagnosis through treatment and to acceptance was a trial. The determined trumpeter-singer made his journey, acknowledged the facts, and used his experience as a source of inspiration. In Patient Patient this is concretised into an album that gives voice to the pouring out of feelings.

The album’s background is interesting, as it was born from real experiences. These are very personal emotions that Pettinen shares with listeners together with his fellow musicians.

Each song has its own story. The album opens with Waiting List, which, true to its name, foreshadows the patient’s wait for access to treatment. The current healthcare system torments people especially through long queues. This experience becomes concrete in this song.

The powerful Adapt models Pettinen’s tinnitus, the programming of which is handled by Vesa Ojaniemi. The vocal lyrics “Can you focus on what you can do with what you have… and adapt, adapt?” repeat over and over — through different emotional states. The piece’s origin goes back to a message Pettinen received, whose verbal rhythm gave the entire track its shape. In the over-11-minute work there are many touching passages: from intense and at times almost aggressive expression, through serene and improvisatory sections, toward its goal. The piece embodies acknowledging a difficult situation, expressing it, and acceptance.

Lumbar Punkture, which makes use of free improvisation, cries out physical pain. It was inspired by a spinal puncture. The procedure is no picnic for the patient. The title track Patient Patient also unloads the frustration brought on by the experiences. Berghäll’s aching baritone-saxophone improvisation is full of pain, with Pettinen’s trumpet solo following and somewhat softening it.

The quartet’s ensemble playing is seamless, and the album is a delightfully versatile whole. The tracks are alive and full of energy — almost to the point of madness — with the improvised parts coloring some of the more peaceful passages. The musicians’ intense collaboration gives rise to cinematic soundscapes that can be placed into concrete situations.

Pettinen is exceptionally brave in expressing intimate feelings for all people through art. He knows how to convey pain in a way many others tell beautiful and romantic stories. That is rare.”



Kulttuuritoimitus

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W238N1645 Rockwood Drive, Suite A
Waukesha, WI
53188

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