- 125
- 52 185
Spastic Paraplegia Foundation
Приєднався 3 лип 2018
Become a memberPlease visit our website at www.sp-foundation.org
Please register with us. It's free... sp-foundation.org/news-resources/register.html
Please register with us. It's free... sp-foundation.org/news-resources/register.html
Відео
Gary Goad with Kim Sanchez
Переглядів 74Місяць тому
2024 SPF Conference. Kim Sanchez interviews Gary Goad.
Connecting with PLS Patients Featuring Dr. Senda-Ajorud Driss
Переглядів 347Місяць тому
This is a virtual meeting for PLS Patients- Dr. Senda Ajorud Driss is the Director of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern - Herbert C. Wenske Professor, Neurology (Neuromuscular Disease)
Breaking down the Science
Переглядів 1142 місяці тому
After the 2024 SPF Conference. James H.McClaren provides a down to earth explanation of the speaker's presentations. Time Stamps 0:0:12 Dr Schierbaum 0:4:26 Dr Zuchner 0:15:14 Dr Calame 0:23:11 Dr Qiang 0:33:56 Dr Piermarini 0:43:59 Dr Mitsumoto 0:51:31 Dr Baas. 1:05:05 Natalie Downs 1:12:11 Dr Blackstone 1:17:07 Critical Path 1:22:32 Dr Fakhari
Tina Croghan's Story
Переглядів 712 місяці тому
Tina tell's her experience living with Hereditary Spastic Paraplegia.
Anne Gridley
Переглядів 762 місяці тому
Anne talks about her life dealing with Hereditary Spastic Paraplegia at the 2024 Annual Conference with Kim Sanchez.
Ray White Speaks about HSP
Переглядів 682 місяці тому
Ray talks about his disability having Hereditary Spastic Paraplegia.
2024 SPF Conference - Friday Sessions
Переглядів 9754 місяці тому
2024 SPF Conference - Friday Sessions 0:53 Dr Hande Ozdinler 1:58 Dr Darius Ebrahimi-Fakhari 3:05 Dr Lauren Leiva 5:33 Thom Hart, Collin Hovinga CPATH 6:20 Natalie Downs Rarebase 6:57 Dr Craig Blackstone 7:36 Dr Hiroshi Mitsumoto
2024 SPF Conference Saturday Sessions
Переглядів 6094 місяці тому
2024 SPF Conference Saturday Sessions 13:30 Dr Peter Baas 1:34 Dr Emanuella Piermaria 1:60 Dr Liang Oscar Qiang 5:05 Linda LaFontaine 5:39 Dr Steven Zuchner 6:11 Dr Daniel Calame 6:41 Dr Luca Schierbaum 7:35 Kim Sanchez:
2024 SPF Conference - Sunday Sessions
Переглядів 2714 місяці тому
2024 SPF Conference - Sunday Sessions
Mental Help Part 2 with Paul Freda M.D.
Переглядів 926 місяців тому
Mental Help Part 2 with Paul Freda M.D.
Adaptive Training with Zachery Lipson
Переглядів 1076 місяців тому
Adaptive Training with Zachery Lipson
Mental Help Part1 with Paul Freda M.D.
Переглядів 2288 місяців тому
Mental Help Part1 with Paul Freda M.D.
SPF Talks with Lori Renna Linton "Potato Pants" Revised
Переглядів 1538 місяців тому
SPF Talks with Lori Renna Linton "Potato Pants" Revised
SPF Talks with Lori Renna Linton "Potato pants"
Переглядів 1359 місяців тому
SPF Talks with Lori Renna Linton "Potato pants"
CENTERS OF EXCELLENCE RESEARCH NETWORK (HSP-CERN)
Переглядів 199Рік тому
CENTERS OF EXCELLENCE RESEARCH NETWORK (HSP-CERN)
2023 SPF Conference - Saturday Sessions
Переглядів 845Рік тому
2023 SPF Conference - Saturday Sessions
Dr John is machine of education for hsp population
Amém 🙏
Muito boa sua Palavra
I have an idea. Stop vaccinating people and you wont have these issues.
good session
I have 4 brothers with this . I have 7 brothers in all. My Mom is the carrier of this gene, as was my Grandma, my Mom's mother.
ua-cam.com/video/mg9ypumv1yY/v-deo.html
what part of the brain does hereditary spastic paraplegia affect?
Hello hereditary spastic paraplegia association. I have hsp spg4 and I am followed at the Carlo Besta hospital here in Italy. I have bilateral Babinski with Hoffmann sign and negative to Romberg sign. I also have many other autoimmune diseases unfortunately. I would like to ask if any of the following chronic condition are associated with Hsp: -Mthfr/Sam e dysfunction -Atherosclerosis with Dyslipidemia -Diabetes mellitus 1/Celiac disease/hypothyroidism -Cardiovascular disease -Chronic gastritis/Pernicious anemia -Hfe gene mutation (hemochromatosis) -spastin cross reactivity to Gad65/acetylcholine. I hope to get some answer and once again thank for your contribution.
We are not doctors here, sorry Visit our website for more information and become a member please
@@SpasticParaplegiaFoundation thanks 💕
Since the mitochondria has been mentioned, has never be studied the human microbiota and microbiome in spg4 ? Since the mthf is responsible for the Atp production, are vitamins such vitamin B12, folate, iron, magnesium involved in the spastin neurotocxicity ? Are neurotrasmitters such glutamic acid and acetylcholine involved in the evolution of the disease? Can a prolonged deficiency in folate activates the disease through the Dna deficiency ? I have always read that dislidyslipidemia is always present in the spg4: would then fatty liver disease, metabolic syndrome, autoimmune thyroiditis be present too ?
Очень просим помочь в лечении Нижняя спастическая параплегия Штрюмпеля G11.4
Hello is there anywhere where i can download Hande Ozdinlers slideshow ?
No sorry that is not allowed
Thank you for having this on our televisions. I have hsp4 and my doctor is Dr.Fink. My question is, what kind of developments for this disease is there to become normal and stable in function?
Thank you again
So my question: is there an enzyme that would break down the mutated spastin?
I have hsp spg4, celiac disease, EoE, Ibs (bile acid malabsortion), lactose intollerance, fructose malabsortion, previously iron anemia, anemia of chronic disease ( High ferritin with low folate), severe vitamin D deficiency and when I went gluten free 6 years ago I developed a metabolic syndrome with high glucose fasting, high tsh, high lipid prifile ( low hdl and really high cholesterol. I had nerves and tendons pain since my early childood. I met my neurologist 2 weeks ago and now I have both Babinski sign and also both Hoffman signs. Despite my situation I found improvement with a pure carnivore diet. As far as I read ( I am more and expert on celiac disease), the hsp is and atp disease. By removing glucose, fructose, high supplementation of vitamin D, by removing gluten( even rice, soya, teff), i have noticed improvement.
Someone could write the question in 51:45? I did not get it. It’s could be one explanation of SPG patients’ mechanism.
A name for my condition that doesn't contain an abelist slur, what will it take? Or is that too much basic dignity for a spastic like me to ask for? I was born with this in the seventies. I've had no support, I've just been shunned, belittled, rejected, neglected and left to fall between all the cracks in our health and welfare systems. I'm over 50. Never had a job. Always lived in poverty with no support from anything or anyone. Now I can't even get a bulk billing GP. Wish I'd just die.
I am so impressed with the huge effort which you have put into making this complex information accessible to non-experts. Thank you
This was great, and thank you especially for the time stamps! 🤗
If you can, please a description of the speaker and the approximate time they speak. Thanks in advance.
Working on that Johanna
@@SpasticParaplegiaFoundation Thank you!!
😂😂w to make it dz
Hocam parkinson tedavisi varmı lütfen yardım edin
Sorry no cure that we know of
What happens to my spine does it disappear?
Thankyou very much this scary hsp an pinched nerve
I have symptoms of other diseases will it get worse?
Yes I have hsp an it started at 40 I'm 48 now I have a wheelchair thankyou I'm finally starting to learn what have but why?
Thank you !
Stephan, thank you for all the work that you do on this disease, I'm lucky to have you in my corner. thanks
great presentation and work. thanks..
wow great research, great to have Dr. Ozdindler in our corner !
Thanks for the great presentation from Dr. Fink, and for sending it out to me, its a pleasure to listen to his advice.
always such a pleasure to listen to Dr Ozdinler who wants so much to make our motoneurones happy 🙂, Hande you are so clear and passionnate by your research that you bring us great joy and so much hope, thank you, Marie
Dr Baas Thank you. I thought this was the best FSP presentation I've ever been to.
How can I get his email address?
What a wonderful person Dr Ozdinler is, her ability to explain her specialty to folks w/o medical degrees is exemplary.
A very knowledgeable man!!🤗👍
Wonderful to hear someone speaking about HSP ! Thanks for sending this!!!!
i recently got a call from my doctor and they told me my genetic test said it showed it is very possible that I have this
I aso got got 2 children one 12 and other 8 with HSP type 56 as the blood genetic results says.
I have a 16 yrs old daughter with hereditary spastic paraplegia.She diagnosed when she’s 3 yrs old
Hi, it looks like my two year old granddaughter might have this disease, we haven’t been officially told, can you pls tell me if your daughter walks and how old was she when she sat unassisted? Thank you
Mi wife have hsp she start it at age of 36
@@doloresmartins146 Did she get vaccinated recently before she developed it?
Good evening, I have just been diagnosed by my Neurologist that I have HSP. I just found out about 2-3 months ago. I am scheduled for a genetics test in Feb 2022. I am nervous but I am glad I discovered this site. It may help me with knowing how to cope with this or maybe one day cured of this by the grace of God. I want to know more about this community.
Please visit our website. In the past 20 years we have accumulated knowledge and made contact with many researchers. SP-Foundation.org Sign up as a member to keep in touch. Sorry we don't visit UA-cam as much as we like. TY for you interest and good luck with you testing. On the website at the bottom of the page you will find social media links.
4 years I've been suffering. And now it's been 2 years that I can't walk without my walker not even one step. I know I have foot drop on both of my feet. But no Dr has been able to help or diagnose me. It's frustrating!
Thank you Dr Blackstone.
what kind of supplements should i take to slow down PLS? I am thinking of injecting humanin peptide.
Great inputs sir,thx🙂
Is there a cure
No, HSP is a Degenerative Neurological Disorder.
Same cuestion
Not as yet. Treatment is management only.
Hello sir Myself Mamta from India. I usually listen your lectures. U described in a very good way about HSP. My brother is also suffering from HSP due to SPG11. Doctors has also diagnosed him with sensory motor demyeilating polyneuropathy. Please suggest if there is any treatment of polyneuropathy.
I apologize for this late reply. I am sorry we don't know of any treatment for that. We are not a medical service. You can join a monthly meeting with our medical advisor DR. Fink. Please check out events on our website SP-Foundation.org
@@SpasticParaplegiaFoundation ok sir
Dear sir I am suffering from hereditary spastic paraplegia complicated variety since sixteen years. I am facing lot of problems. Would you please kindly advise me there is any treatment to lead some good life
Sorry no cure that we know of. That's why we are raising money for research.
For cognition being effected, would being diagnosed with a learning disorder or disability be an example?
Does a normal emg test on ones leg rule out hsp?
Just seeing this, have u had a blood test for genetic mutations? Im surprised there aren’t more comments/questions here.
I have not. I had one blood test to rule out polymyositis and was told they can’t definitively say I have polymyositis since I was missing certain marker(s) but couldn’t definitively say I didn’t have it because I had one marker that is associated with it. Or something like that. I never asked to rule out HSP because I didn’t find out about it until after all the other testing that got done (brain mri, thigh/hip mri, thigh muscle biopsy)
But I wasn’t sure if there was a reason to ask for genetic testing unless its common enough to have a clear mri scan, nerve conduction test, and emg. Plus if the only thing that can be done is physio therapy, I’ve been going to physio