New YouTube video from Hope Bioscience - Cure Parkinson's
New YouTube video from Hope Bioscience
Great post! Thank you.
So there is a new trial going on, per the video. Enrolling now.
Ah, there is a link to a case report on that patient, Dr Inci Ertan: Long-term, repeated doses of intravenous autologous mesenchymal stem cells for a patient with Parkinson's disease: a case report ncbi.nlm.nih.gov/pmc/articl...
"Case history: Herein, we present a case of a 77-year-old, white, non-Hispanic or Latino female diagnosed with PD in 2004, suffering from severe neurodegenerative deterioration for over 17 years. The patient's weight, height, and BMI at screening were 57.5 kg, 157.5 cm and 23.2 kg/m2 respectively. What started out as a left-hand tremor progressed to cogwheel rigidity, bradykinesia, chorea, athetosis, dystonia, truncal swaying, head tremor and dyskinesia. Her past medical history displayed several other nervous system and musculoskeletal disorders that included: Kyphosis, Tendinitis de Quervain's, Distal Neuropathy, Restless Leg Syndrome, and insomnia, along with a history of fractures in her rib and LS spine. Her surgical history included total hip replacement, tonsillectomy, and cosmetic eye surgery. She experienced a combination of side effects and resistance to treatments, some of which included dyskinesia associated with Comtan, nausea and vomiting with Azilect, and the on-off phenomenon linked to Sinemet (which the patient started taking in 2013). The patient's complete medication regimen included: Sinemet (25/100 mg) 5x daily, Rytary (36.25/145 mg) 2 capsules 4x daily, Azilect (1 mg) daily, Comtan (200 mg) 5x daily, Neupro (4 mg) transdermal daily, Requip (8 mg) daily, Ambien (10 mg) nightly, Melatonin (15 mg) nightly, Gabapentin (300 mg) prn, and Tylenol (1,000 mg) prn. Despite being on all these medications, it was only enough to help her walk; she still experienced frequent falls, severe dyskinesias, and repetitive episodes of freezing. She would slide out of the chairs she sat in, was unable to turn around in bed, had very stooped posture, and required the assistance of an in-house caregiver. There were not many restorative treatment options available for this patient after she exhausted the extensive list of failed medications.
In August 2019, FDA authorized an expanded access protocol for intravenous administration of eight infusions of autologous HB-adMSC treatment for this PD patient. The patient responded quite well to the therapy with no safety concerns that led us to continue her treatment, and in December 2019, FDA approved another set of 12 monthly infusions. The infusion treatments resulted in positive findings associated with significant improvements in patient's parkinsonian symptoms. After completing 20 infusion treatments, FDA approved 6 more infusions to the patient's protocol in January 2021, which continued at the same dose, but the interval changed from every 4 weeks to every 8 weeks (Figure 1A). A total of 26 infusions were received by the patient over the course of ~2.5 years."
"Treatment and results: After receiving ~ first 10 infusions, noticeable improvements were seen in her posture, accompanied by less frequent dyskinesias, or freezing, and no tremors. Additionally, she exhibited a normal gait and an overall improvement in her ability to carry out activities of daily living (ADLs) independently. These improvements were notable given the severity of her symptoms before receiving the intervention. Before MSC infusions, she was on very high doses of a variety of medications and required a 24-h live-in caregiver. However, following the HB-adMSC intervention, we observed notable improvements in her PD symptoms with greatly improved quality-of-life. Moreover, she discontinued her Ambien after experiencing significant improvements following 12 infusions and her neurologist also discontinued Sinemet, Azilect and Comtan along with 25% reduction in Rytary. She also started to prepare meals and perform other household chores and no longer required the help of a caregiver. To assess the effectiveness of HB-adMSC therapy, several evaluation methods including UPDRS scores, neuro-quality-of-life assessments, and neuroimmune imaging with FDG-PET, were employed."
"Unified Parkinson's disease rating score: UPDRS assessment tool was used to evaluate motor functionality of the patient. Specifically, the parameters assessed under the UPDRS evaluations were (1) Activities of Daily Living (UPDRS part II), (2) Motor Examination (UPDRS part III), and (3) Complications of Therapy (UPDRS part IV). The patient showed significant improvements in each of these areas—post-therapy, the patient demonstrated remarkable improvements in UPDRS part II, for each of the activities of daily living, compared to baseline (Figure 2A, left). Also, the total score for UPDRS part II showed significant improvements (score improved from 18 to 4) (Figure 2A, right). Similarly, several improvements were seen in the areas of motor examination UPDRS part III scores, with the most notable changes observed in patient's rigidity (Figure 2B, left). There was an overall improvement in her motor symptoms that included, tremors at rest, hand movements, leg agility, gait, as well as body Bradykinesia and Hypokinesia (the total UPDRS part III score improved from 14 to 2) (Figure 2B). Additionally, following HB-adMSC therapy, the patient's disabling dyskinesias were no longer severe; the total UPDRS IV score improved from 7 to 0 "
It has been enrolling for a while. They need 60 people to complete the trial for it to be finished.
What is stopping a flood of applications?
I believe it's the travel costs. I am enrolled and drive to Houston from Missouri. It seems like there would be 60 people with Parkinson's in the Houston area. The treatments are administered in sugar land TX, a suburb of Houston. I know someone going there from Oregon and someone else from the east coast.
Hi there- I am thinking of getting the stem cell infusion and wanted to know if it has benefited you. I would really appreciate if you could share your experience.
Also it is hard to find information on these trials. I just happened to see an article online about it. I emailed and was signed up the next week.
I found this online by chance also
Did you enroll?
Yes. I am completing my second trial next month.
I live in California. How many times per month do you have to go to Sugarland?
There is an initial intake visit where they take blood samples and do standard Parkinson's testing. Then you go monthly for infusions and then there is several months off at the end of the infusions and then a final blood draw and testing. It is a double blind trial so half of the participants get the stem cells and half get the placebo. If you receive the placebo in the trial you get 6 stem cell infusions after the results are finished. The people working there are amazing and so dedicated to helping people.
Thank you so much for the information and for patiently answering my questions. I am going to sign up. I will direct message you when it goes forward and if I get accepted .
My only concern after seeing the screening questionnaire, is that I am at the borderline dosage of their Levodopa requirements which is 1200 mg per day.
You can call and ask them about it. Do you want a contact number?
You can call and ask them about it. Do you want a contact number?
Please share the number. Does one have to be on Ldopa or have a DAT scan before being able to enroll?
You have to have been diagnosed at least 2 years ago. Ldopa or DAT not required. They do run some blood work. The contact number is 832-975-8846. Or email sherry@hope.bio
Thank you! I will give them a call tomorrow.
You are welcome. I hope things go well for you.
Thanks Bolt. I don't know what to make of this. The "before" is a lot like my WWP. Been down a lot of useless avenues.
Her before was needing 24 hour a day caregiver and they didn't specify in this video but the amount of medication she was taking was huge. I understand your hesitation though. There are indeed a lot of scams about "cures". If you check you will see that the stem cells produced by Hope are so revolutionary they are being used in trials run by other companies and universities. Also Hope just received a multi million dollar grant from the government to study traumatic brain injury. They have done trials in long covid and spinal cord injury. They are seeing improvement in conditions that have never seen improvement before. There's still work to get done before anything can be FDA approved but they are a determined bunch.
I have received 6 infusions within a year through the “right to try” act, and though I could not follow the exact protocol (I live in Europe), I am convinced my symptoms are stable thanks to the infusions. If I could I would participate in the trial. The team working at Hope are great.
Good to hear from you. I was in 2 trials but got the placebo in both. Heading to Houston next month to get the real deal. Can't wait!
Will you be getting autologous stem cells or allogenic stem cells?
Autologous. Most of current trials are using allogenic. The trial I'm starting is tied to the first one I was in and I had to pay to bank my cells. It was their first trial with more than 1 person. There were 24. They have seen in newer trials that the allogenic cells are just as effective.
Hey there- I just signed up to bank my own cell. Did you get your infusion through IV or intrathecal and have you noticed any benefits or side affects?
Hello, up until now they have been iv because it was part of a trial. My trial is over in September and I am signed up for my first intrathecal. Yes I am getting better. Have cut meds until I was only on.a Rasagiline and 2/64,ths of a tsp of Mucuna. Last week I was showing signs of dopamine overdose so I am weaning off the Rasagiline.
There is a Facebook group for people getting the treatment and people thinking about it.
What is the name of the group
Stem cell clinical trial for PD
Thanks so much
Thanks so much for your feedback and I hope it works for me as well
Make sure you document your symptoms before the infusions so you can visibly see their impact. Best wishes! Are you getting only intravenous? or also intrathecale? I heard they may be starting with those with some patients as that protocol seems to be applied in other studies as well.
Yes. I have started writing down my current symptoms. It's so easy to forget. Im not sure what the protocol will be. I guess I'll find out at my intake appointment the end of this month. I also had heard they are trying intrathecale. It's an interesting idea.
Hi there- I am thinking of getting the stem cell infusion and wanted to know if it has benefited you. I would really appreciate if you could share your experience.
It is as I described above, I haven't had more infusions but planning to get more next year. The benefits may be different for different people.
This is the study/compassionate appeal for a stem cell treatment that was a one time approval Stem cells from the patient herself were harvested and used for the infusion.
The currently enrolling study uses donated cells from donors. I am not sure if I want to sign up for that.
ncbi.nlm.nih.gov/pmc/articl...
They are having the same good results with the donor cells they had with the other. The donor cells were harvested before covid so no wondering about vaccination.
This is the study contact information :
Hope Biosciences Research Foundation
Address
16700 Creekbend Dr
Sugar Land TX, 77478 United States
Account Phone
346-900-0340
Website
Principle Investigator
Dr. Thanh Cheng
Sub Investigator
Study Manager
Thank you, 7springshollow for bringing this to our attention. In one of her several videos, the CEO mentioned that using one's own stem cells is totally safe. Interesting that she would say that, which troubles me. Does that mean that donated stem cells are not totally safe?
I was extremely excited about it last week and was raring to go. After reading the study on which their "hope" is based on. I am not so sure about infusion with third-party stem cells.
I am glad that you got to use your own cells. I am happy for you and let us know if you have experienced any improvements.
I would look at the date on the video. They are conducting the trials as per FDA. The first 3 used the patients own cells and that is probably when the video was made. They have since moved on to donor stem cells and still having the same great results in those trials.
I can’t access the video
If you go to YouTube and search for Hope Bioscience you can see all of their videos.
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