Superficial Siderosis Research Alliance

Superficial Siderosis Research Alliance livingwithss.com is the digital publication of the Superficial Siderosis Research Alliance for learning about superficial siderosis. The SSRA is a 501(c)(3) nonprofit whose mission is advocacy, education, and fundraising for medical research.

SSRA is a 501(c)(3) nonprofit whose mission is to raise funding for research benefiting the superficial siderosis community.

Operating as usual

Living your #BestLife means you need to look beyond simply treating the symptoms. Both your physical and mental health w...
10/13/2021
Exercises for Balance and Mobility | Rhys Holmes

Living your #BestLife means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By moving towards a healthier diet, exercising to your personal limits, and managing any other coexisting medical issues, you increase your chance of positively affecting your wellbeing. #superficialsiderosis

The Importance of exercise in superficial siderosis. We all know that keeping fit is good in general, but even more so when it comes to someone who is living...

Superficial Siderosis Research Alliance | Help Us Find A Better Future
10/13/2021
Superficial Siderosis Research Alliance | Help Us Find A Better Future

Superficial Siderosis Research Alliance | Help Us Find A Better Future

The Superficial Siderosis Research Alliance's mission is to support, educate, advocate, and raise funding to benefit those diagnosed with the ultra-rare neurodegenerative disorder, Superficial Siderosis. #superficialsiderosis #igniteSSRA

#doctorlife #physician #raredisease #SuperficialSiderosis #AwarenessMatters
10/11/2021

#doctorlife #physician #raredisease #SuperficialSiderosis #AwarenessMatters

#doctorlife #physician #raredisease #SuperficialSiderosis #AwarenessMatters

October marks the start of our fundraising season. While contributions have been steady through this challenging year, w...
10/08/2021
Superficial Siderosis Research | Superficial Siderosis Research Alliance

October marks the start of our fundraising season. While contributions have been steady through this challenging year, we are behind over $15,000 in donations from last year. Our annual Silent Auction is the first upcoming event of our year. Please take a moment to learn how your support will make a difference.

Superficial siderosis research can build knowledge and speed up access to better symptom management therapies

Should You Visit A Neuropsychologist? | Rori Daniel
10/08/2021
Should You Visit A Neuropsychologist? | Rori Daniel

Should You Visit A Neuropsychologist? | Rori Daniel

If you or someone close to you begins to notice changes in mood, memory, problem-solving, or behavior, it may be time to visit a neuropsychologist.

We believeDo You?#belive #hope #believeinhope #raredisease #advocacy #research #igniteSSRA #ataxiaawareness #HearingLoss...
10/07/2021

We believe
Do You?

#belive #hope #believeinhope #raredisease #advocacy #research #igniteSSRA #ataxiaawareness #HearingLoss #chronicillness #chronicpain #vestibular #superficialsiderosisresearchalliance #superficialsiderosis

We believe
Do You?

#belive #hope #believeinhope #raredisease #advocacy #research #igniteSSRA #ataxiaawareness #HearingLoss #chronicillness #chronicpain #vestibular #superficialsiderosisresearchalliance #superficialsiderosis

10/02/2021
The SSRA online auction keeps getting better
10/01/2021

The SSRA online auction keeps getting better

Caregivers help make it happen #thankful #caregiver #RareDisease
09/30/2021

Caregivers help make it happen

#thankful
#caregiver #RareDisease

Caregivers help make it happen

#thankful
#caregiver #RareDisease

The September Awareness Month Home StretchAs we enter the home stretch this awareness month, we would like to remind you...
09/29/2021

The September Awareness Month Home Stretch

As we enter the home stretch this awareness month, we would like to remind you why September is critical to our mission. In a busy world, it’s easy to forget that not everyone has a personal connection to superficial siderosis. The vast majority of the world has never heard the words, let alone understand what a diagnosis means.

When we take one month out of our busy year to concentrate on superficial siderosis awareness, we put those words on thousands of screens, day in and day out. According to the experts, it takes seven repetitions for new information to become a part of your short-term memory—30 days of awareness. Just maybe, we can eclipse the short-term and grow into the long-term.

#awareness #awarenessmonth #AwarenessMatters #awarenessmonth #superficialsiderosis #superficialsiderosisresearchalliance

The September Awareness Month Home Stretch

As we enter the home stretch this awareness month, we would like to remind you why September is critical to our mission. In a busy world, it’s easy to forget that not everyone has a personal connection to superficial siderosis. The vast majority of the world has never heard the words, let alone understand what a diagnosis means.

When we take one month out of our busy year to concentrate on superficial siderosis awareness, we put those words on thousands of screens, day in and day out. According to the experts, it takes seven repetitions for new information to become a part of your short-term memory—30 days of awareness. Just maybe, we can eclipse the short-term and grow into the long-term.

#awareness #awarenessmonth #AwarenessMatters #awarenessmonth #superficialsiderosis #superficialsiderosisresearchalliance

Following a brain-healthy diet, reading, and staying active will help you #staysharp #brainpower #brainhealth #cognitive...
09/29/2021

Following a brain-healthy diet, reading, and staying active will help you #staysharp

#brainpower #brainhealth #cognitivedecline #cognitive #minddiet #superficialsiderosis #superficialsiderosisresearchalliance

Following a brain-healthy diet, reading, and staying active will help you #staysharp

#brainpower #brainhealth #cognitivedecline #cognitive #minddiet #superficialsiderosis #superficialsiderosisresearchalliance

Dysdiadochokinesia (DDK) comes from changes to the cerebellum and is a form of ataxia that leads to the loss of coordina...
09/28/2021

Dysdiadochokinesia (DDK) comes from changes to the cerebellum and is a form of ataxia that leads to the loss of coordination of speech and movement.

Signs Include:
changes in balance and gait
slow, awkward or rigid movements
declining coordination of the arms, hands, or legs
inarticulate or incomprehensible speech patterns
impairment of directional movement
#learnthefacts #superficialsiderosis

Dysdiadochokinesia (DDK) comes from changes to the cerebellum and is a form of ataxia that leads to the loss of coordination of speech and movement.

Signs Include:
changes in balance and gait
slow, awkward or rigid movements
declining coordination of the arms, hands, or legs
inarticulate or incomprehensible speech patterns
impairment of directional movement
#learnthefacts #superficialsiderosis

Learn the answers to the 8 most frequently asked questions about Superficial Siderosis #learnthefacts #AwarenessMatters ...
09/27/2021
8 Things You Need To Know About Superficial Siderosis

Learn the answers to the 8 most frequently asked questions about Superficial Siderosis #learnthefacts #AwarenessMatters #education #awareness #SuperficialSiderosis #livestrong

Rhys Holmes shares the answers to the eight most asked questions about superficial siderosis. Take advantage of learning the facts about this rare neurodegen...

Go GREEN this September for Superficial Siderosis#research #education #AwarenessMatters #raredisease #findaway
09/27/2021

Go GREEN this September for Superficial Siderosis
#research #education #AwarenessMatters #raredisease #findaway

Go GREEN this September for Superficial Siderosis
#research #education #AwarenessMatters #raredisease #findaway

WOW, over 120 baskets for our online auction planned to start October 16th
09/26/2021

WOW, over 120 baskets for our online auction planned to start October 16th

Visit the SSRA website to request your free informational brochure today ssra.livingwithss.com #learnthefacts✔ #superfic...
09/26/2021

Visit the SSRA website to request your free informational brochure today ssra.livingwithss.com #learnthefacts✔ #superficialsiderosis

Visit the SSRA website to request your free informational brochure today ssra.livingwithss.com #learnthefacts✔ #superficialsiderosis

Balance and mobility may see improvement with regular sessions. New areas of the brain can be retrained to create new pa...
09/25/2021

Balance and mobility may see improvement with regular sessions. New areas of the brain can be retrained to create new pathways #learnthefacts✔ #mobility #balanceimpairment #vestibularrehab #phisicaltherapy #superficialsiderosis

Balance and mobility may see improvement with regular sessions. New areas of the brain can be retrained to create new pathways #learnthefacts✔ #mobility #balanceimpairment #vestibularrehab #phisicaltherapy #superficialsiderosis

Asking questions is important. Understanding the answers is key  #communicationiskey #superficialsiderosis #LearnTheFact...
09/25/2021

Asking questions is important. Understanding the answers is key #communicationiskey #superficialsiderosis #LearnTheFacts #raredisease

Asking questions is important. Understanding the answers is key #communicationiskey #superficialsiderosis #LearnTheFacts #raredisease

The Superficial Siderosis Research Alliance celebrates its 2nd anniversary on September 24, 2021Since its inception in 2...
09/24/2021

The Superficial Siderosis Research Alliance celebrates its 2nd anniversary on September 24, 2021

Since its inception in 2019, the SSRA has been honored to represent the superficial siderosis rare disorder community. Battling a rare disorder is difficult, but patients and caregivers are no longer alone in this fight with the Superficial Siderosis Research Alliance (SSRA).

This past year the SSRA has provided educational and awareness material to patients and providers supporting our mission. Guidelines for U.S. patients who need assistance with social security disability applications. Hosts an updated global physician directory for those looking for a provider or surgeon familiar with superficial siderosis and helps connect to the Superficial Siderosis Clinic at Mass General Hospital. Represented the SS patient healthcare interests at the state and federal legislative levels and launched a network of advocates to assist newly diagnosed families.

The updated Global Patient Registry now offers a research portal in partnership with the Vanderbilt University RedCap consortium. REDCap provides an easy-to-use and secure method of flexible yet robust data collection for any research project. Additionally, the SSRA now has the technology to host webinars, symposiums, and other virtual events with an attendance capability of up to 1000 viewers.

"The SSRA has experienced exceptional technological growth and development over the last year. This progress will allow us to begin the next steps towards our goal of a patient-directed collaborative research network."

During September, patients, families, and friends around the world now observe Superficial Siderosis Awareness Month. Each of us knows someone with a rare disease or disorder. In our country, more than 7,000 rare diseases affect over 25 million Americans. Unfortunately, these families often have trouble accessing life-saving medical treatment or other services because their insurance companies or physicians are unfamiliar with their conditions.

About the Superficial Siderosis Research Alliance (SSRA)

The Superficial Siderosis Research Alliance (SSRA) is a U.S.-based 501(c)(3) nonprofit organization supporting patients and families around the world who are diagnosed with Superficial Siderosis. Founded in 2019 and headquartered in Waukesha, WI, the SSRA seeks to lead the way for research, patient advocacy, education, and public awareness.

For information about Superficial Siderosis, visit livingwithss.com

To learn about the Superficial Siderosis Research Alliance Mission,
visit ssra.livingwithss.com

Patients may enroll in the Superficial Siderosis Patient Registry at superficialsiderosis.org

The Superficial Siderosis Research Alliance celebrates its 2nd anniversary on September 24, 2021

Since its inception in 2019, the SSRA has been honored to represent the superficial siderosis rare disorder community. Battling a rare disorder is difficult, but patients and caregivers are no longer alone in this fight with the Superficial Siderosis Research Alliance (SSRA).

This past year the SSRA has provided educational and awareness material to patients and providers supporting our mission. Guidelines for U.S. patients who need assistance with social security disability applications. Hosts an updated global physician directory for those looking for a provider or surgeon familiar with superficial siderosis and helps connect to the Superficial Siderosis Clinic at Mass General Hospital. Represented the SS patient healthcare interests at the state and federal legislative levels and launched a network of advocates to assist newly diagnosed families.

The updated Global Patient Registry now offers a research portal in partnership with the Vanderbilt University RedCap consortium. REDCap provides an easy-to-use and secure method of flexible yet robust data collection for any research project. Additionally, the SSRA now has the technology to host webinars, symposiums, and other virtual events with an attendance capability of up to 1000 viewers.

"The SSRA has experienced exceptional technological growth and development over the last year. This progress will allow us to begin the next steps towards our goal of a patient-directed collaborative research network."

During September, patients, families, and friends around the world now observe Superficial Siderosis Awareness Month. Each of us knows someone with a rare disease or disorder. In our country, more than 7,000 rare diseases affect over 25 million Americans. Unfortunately, these families often have trouble accessing life-saving medical treatment or other services because their insurance companies or physicians are unfamiliar with their conditions.

About the Superficial Siderosis Research Alliance (SSRA)

The Superficial Siderosis Research Alliance (SSRA) is a U.S.-based 501(c)(3) nonprofit organization supporting patients and families around the world who are diagnosed with Superficial Siderosis. Founded in 2019 and headquartered in Waukesha, WI, the SSRA seeks to lead the way for research, patient advocacy, education, and public awareness.

For information about Superficial Siderosis, visit livingwithss.com

To learn about the Superficial Siderosis Research Alliance Mission,
visit ssra.livingwithss.com

Patients may enroll in the Superficial Siderosis Patient Registry at superficialsiderosis.org

Go Green This September for#SuperficialSiderosis awareness #learnthefacts✔ #hearingloss #tinnituslife #neuro
09/23/2021

Go Green This September for
#SuperficialSiderosis awareness #learnthefacts✔
#hearingloss #tinnituslife #neuro

Go Green This September for
#SuperficialSiderosis awareness #learnthefacts✔
#hearingloss #tinnituslife #neuro

Living with a rare disorder may change how you live but it can not change who you are 💚 Go GREEN this September for Supe...
09/22/2021

Living with a rare disorder may change how you live but it can not change who you are 💚 Go GREEN this September for Superficial Siderosis Awareness #iamstillme #rarediseaseawareness #mood #LearnTheFacts #livestrong

Living with a rare disorder may change how you live but it can not change who you are 💚 Go GREEN this September for Superficial Siderosis Awareness #iamstillme #rarediseaseawareness #mood #LearnTheFacts #livestrong

Superficial Siderosis can affect personality and behavior in some cases. #learnthefacts✔ #mood #anxiety #outbursts #neur...
09/22/2021

Superficial Siderosis can affect personality and behavior in some cases. #learnthefacts✔ #mood #anxiety #outbursts #neuro #superficialsiderosis

Superficial Siderosis can affect personality and behavior in some cases. #learnthefacts✔ #mood #anxiety #outbursts #neuro #superficialsiderosis

Go Green This September for #SuperficialSiderosis awareness  #LearnTheFacts
09/21/2021

Go Green This September for #SuperficialSiderosis awareness #LearnTheFacts

Go Green This September for #SuperficialSiderosis awareness #LearnTheFacts

No one should have to just live with it  Visit lvingwithss.com to learn more#superficialsiderosis #LearnTheFacts#raredis...
09/21/2021

No one should have to just live with it
Visit lvingwithss.com to learn more
#superficialsiderosis #LearnTheFacts
#raredisease #stopThebleed #careplan

No one should have to just live with it
Visit lvingwithss.com to learn more
#superficialsiderosis #LearnTheFacts
#raredisease #stopThebleed #careplan

Go GREEN this September forSuperficial Siderosis Awareness #iamstillme#awarenessmonth  #superficialsiderosis#familylove ...
09/20/2021

Go GREEN this September for
Superficial Siderosis Awareness #iamstillme
#awarenessmonth #superficialsiderosis
#familylove #support #raredisease
#chronicillnesslife

Go GREEN this September for
Superficial Siderosis Awareness #iamstillme
#awarenessmonth #superficialsiderosis
#familylove #support #raredisease
#chronicillnesslife

Timeline Photos
09/19/2021

Timeline Photos

As more than 90% of rare diseases have no U.S. Food and Drug Administration (FDA)-approved treatment, accelerated approval is critical for rare disease patients. This pathway provides access to new, safe, and effective drugs for patients with serious and life-threatening diseases for which there are no meaningful alternatives. Read our latest report to learn more: https://bit.ly/3CON9IC

09/19/2021

Help us find a better future by joining our effort to raise awareness of this ultra-rare disorder. Our worldwide patient-led advocacy and awareness ambassadors are meeting these challenges head-on.

Go GREEN every September for Superficial Siderosis

Learn about the SSRA Mission
ssra.livingwithss.com

For SS information visit livingwithss.com

#superficialsiderosis #raredisease #awareness #GrassRoots #igniteSSRA #learnTheFacts

Go GREEN this September forSuperficial Siderosis Awareness #iamstillme#awareness #superficialsiderosis#notdefinedbymydia...
09/19/2021

Go GREEN this September for
Superficial Siderosis Awareness #iamstillme
#awareness #superficialsiderosis
#notdefinedbymydiagnosis #raredisease
#chronicillnesslife

Go GREEN this September for
Superficial Siderosis Awareness #iamstillme
#awareness #superficialsiderosis
#notdefinedbymydiagnosis #raredisease
#chronicillnesslife

Address

W238N1645 Rockwood Dr, Suite A
Waukesha, WI
53188

General information

livingwithss.com, ssra.livingwithss.com, and superficialsiderosispatientregistry.org are partners in the Superficial Siderosis Research Alliance

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Videos

Superficial Siderosis Fact Sheet

Superficial siderosis is a slowly progressive chronic neurodegenerative condition due to iron toxicity from persistent subarachnoid bleeding. The human body has a limited capacity to rid itself of blood products in the subarachnoid space, but in ultra-rare cases, chronic or intermittent bleeding over the years to decades eventually leads to overwhelming amounts of toxic free-iron molecules.

These toxic free-iron molecules are curbed by a protein called ferritin which together forms a layer of hemosiderin around the brain, brain stem, spinal cord, and optic nerves. Long-term exposure is toxic to the tissue underneath resulting in hearing loss, imbalance, dizziness, weakness, numbness and bowel/bladder dysfunction. Although easily identified by ​magnetic resonance imaging ​(MRI), superficial siderosis is often confused for other progressive neurological conditions such as multiple sclerosis, Parkinson’s, or multiple system atrophy.


  • Due to the severe nature of the disease, in 2018 the Social Security Administration added superficial siderosis to the Compassionate Allowance list of conditions that allows for the fast-tracking of disability claims.

  • Infratentorial ​superficial siderosis ​classic symptoms are ataxia, sensorineural hearing loss, and myelopathy​. An estimated 95% of patients will experience hearing loss.
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    Comments

    I have been on Ferriprox for about 3 years now. My body has taken it well. The only lab that has been chronically out of normal range is my Eosinophil level. For about 2 years it has been at zero. The rest of my white blood cell counts have stayed within range. Dr. Levy is not concerned about my Eosinophil count. Within the past year my zinc levels have slightly dipped below the normal range a handful of times. Dr. Levy had me start to supplement with zinc. For the most part that has kept my zinc levels in range. Have any of you on Deferiprone experienced a drop in your zinc levels?
    Please all SS patients can you go to Janice Toovey 's Post on The Silent Bleed regarding her survey of sufferers and leave your name & area you live. This is crucial as Prof Werring of London is loosing his clinical nurse due to funding. We need to lobby MP's to help us all here in the UK. For the government don't think our condition is worth funding. We need your help and support.
    I had a tele-visit with Dr. Levy this afternoon to review my most recent MRI. I've been taking Ferriprox for approximately 8 years. Last few MRI's were poor quality due to not being able to stay still because of back problems. This last MRI was a good Image. Dr. Levy informed me that virtual all of the iron deposits on my cerebellum are gone. I still need to continue the Ferriprox due to SS in the spinal column, but I have to tell you I am so relieved to know it's working. Thank you Dr. Levy.
    hey my fellow SS friends I could use some big time prayers. My cancer has returned and the oral chemo is not working..scared beyond belief
    Thank you guys! You rock! I got this top today it fits awesome! I love it @LivingwithSS ps I’m not very good at selfie’s!! Love the top! #superficialSiderosis
    I had a disturbing conversation with a pharmacist at Eversana, the US distributer of Ferriprox yesterday. I called because I’ve been hit with texts about the benefit of switching from 500 mg tablets to the 1000mg tabs. Literature and the website sent says that dosage should be 75-99mg/kg/day. This is a much higher dosage then most of us are on at 2000-2500 mg/day. She explained that this dosage is fore people getting weekly blood transfusion and not SS. It seems the 1000 mg tabs are a new formulation which will keep the 1000mg tabs under patent, so the manufacture can be the sole manufacture of Ferriprox. I inquired as to when the 500mg tabs would be generic, she informed me that she does not know as Eversana will not be distributing it when it is available for generic manufacturing. She said the current manufacture of Ferriprox has no plans to manufacture the generic. Is anyone aware when in 2021 Ferriprox will be generic and if there is a drug company out there who plans on offering the generic? How do we find out if there will be an available generic in the US?
    Has anyone had any problems after getting a flu shot while on Ferriprox? Any advise welcomed!
    This weekend only - until midnight Sunday 20th September - MyGivingCircle will donate $1 for every new person that votes for the Superficial Siderosis Research Alliance at https://mygivingcircle.org/charity/superficial-siderosis-research-alliance/ Your vote could help us share in $45,000 of grants on September 30th but this weekend only MyGivingCircle will also donate $1 for each new person that votes. 200 new voters = $200 for the SUPERFICIAL SIDEROSIS RESEARCH ALLIANCE ! If you haven't voted for us before, please take a moment to vote at https://mygivingcircle.org/charity/superficial-siderosis-research-alliance/ and make sure you nominate us as your favorite Charity. If you have voted for us, please share this post so we can get as many new votes as possible at https://mygivingcircle.org/charity/superficial-siderosis-research-alliance/
    Wish me luck tomorrow I will have my first Zoom Dr. appt. with Dr. from Mayo.
    Since having been diagnosed December 2019, my first appointment with a neurologist is coming up. I have no idea if the doctor knows much about Superficial Siderosis but I guess it’s a start. There was a post here a while back that suggests information about this disease to take to the appointment..can anyone help me out? I am trying to get into Mayo 🙏🙏
    I tried to put a comment on the Understanding Ferriprox article: The comment was rejected with the comment: "Were sorry you are not allowed to proceed. Your request looks suspicious similar to a automated requests from spam posting software......... If you believe..... let us know RI: YZIWRETK6FHUXOXCN12TED7L