PSP Friends: FYI--Announced TODAY
Alectos Therapeutics Announces FDA Orphan Drug Designation for MK-8719: An Investigational Small-molecule OGA Inhibitor for Treatment of Progressive Supranuclear Palsy
Advances Novel Tau-directed Strategy for treating Neurodegenerative Disease; Phase 1 Clinical Trial complete
Did you contact the company?
Just sent 2 emails to see where the trials are being done here in the US. clinicaltrials.gov/ct2/show.... Gave them my number, since 1 or 2 are being done in Fl. See if I get any answer also have telephone number here. Being done in other states. Alectos is working with Merck here in the US. Will see what happens.
Auddonz (aka Audrey )
Very interesting!
X
Wonderful news! So many promising things being worked on, but I'm afraid too late for my precious bride.
Ketchupman
I am so sorry ketchupman 
I hate that this can't happen fast enough Ketchupman and NannaB! I hate this disease and what is doing to the people we love.
Nikkie
Got some semi good news today! Abbvie (drug company testing C2N) is taking to next phase, as it passed safety concerns. AND they are now considering "compassionate use" cases. But one of their doctors believes my bride is too far progressed to benefit. This drug apparently prevents Tau from spreading, but not reversing the damage already done. Praying they will still let her try it anyway. But at least there is hope for others.
Ketchupman
Where are you again Ketchupman? I need to check out this Abbvie/C2N.
Thanks,
Nikkie
We're in Louisville, KY. But we want to Dallas for C2N eval. Several other locations are involved as well. Check clinicaltrials.gov
Thanks Ketchupman. I saw the Dallas one-- I think its in June. I was waiting for the stem cell process to happen and then was going to reach out to Dallas. Keep in touch.
Nikkie
This is what I found...
There are a couple sites in Texas for BMS and C2N trials:
The University of Texas Southwestern Medical Center
Recruiting
Dallas, Texas, United States
Contact: Jennifer Armstrong, Site 0003 214-648-3470 Jennifer.Armstrong@utsouthwestern.edu
Principal Investigator: Padraig O'Suilleabhain
Texas Health Presbyterian Dallas
Recruiting
Dallas, Texas, United States, 75231
Contact: Diana Kerwin, MD 214-345-4449 dianakerwin@texashealth.org
Contact: Stephanie Lindsey, NP 214-345-4449 stephanielindsey@texashealth.org
Principal Investigator: Diana Kerwin, MD
Are you all doing the C2N Trial at Texas Health Presbyterian Dallas?
Thanks,
Nikkie
Texas Presbyterian is where we went on 12/1/15 but was rejected due to Kim's condition. Called doctor on Thursday and left message about Abbvie considering compassionate use, but haven't heard back from Dr. I wonder if they have any idea how agonizing this is?
Ketchupman
The C2N study starts in July in Dallas. Waiting for another email because they make it sound like we need to live in the Dallas area--not sure why? Asked more questions, waiting for a response.
Nikkie
Must be for the next phase of this drug. Because they were already giving out doses last November. There were going to be 3 variations in dosage strengths. If we were successful, she would had gotten the higher dose starting this past January. They paid all of our expenses (airfare, hotel, food, cab fare, baggage fees). I'm sure they'd love to have locals participate, but there just aren't enough PSP'rs to fill the need.
She did say they were currently recruiting CN2. Will keep you posted Ketchupman when she responds.
Nikkie
Us as well but I hope and pray it helps someone else battle and conquer the horrid disease!
They are doing studies here in the US
Contacted Texas Health Presbyterian (THP), Dallas, Texas, United States, earlier this week and they are recruiting PSP patients for C2N trial.
The lead contact:
Diana Kerwin, MD 214-345-4449 dianakerwin@texashealth.org
and
Stephanie Lindsey, NP 214-345-4449 stephanielindsey@texashealth.org
Principal Investigator: Diana Kerwin, MD
It is the C2N trial phase 2. They had 32 subjects for phase 1 but only 4 qualified for the infusion. The 4 have had success and phase 2 will take place August 2016. We have scheduled an appt. with Dr. Kerwin for end of July in Dallas for the pre-screening to determine if my guy qualifies (includes cognitive test, neuro exam, movement exam--has to be able to walk/eat independently, be able to tolerate MRI). In talking with THP representative it sounds like my guy would qualify, but we will see in July. The trial treatment is all via IV infusions. After the initial infusion, an infusion is given once a month--6-12 months.
I share this with all of you because I know they need PSP subjects. Keep you all posted.
Nikkie
Hi Nikki
Because you have not posted anything further since ??April, I was just wondering what was happening with this trial? If you could please let me know I would really appreciate it. Thank you, and cheers, Bindi
We were scheduled for an appt. yesterday in Dallas at Texas Presbyterian but they (clinical trial team) is still finalizing paperwork for study. They called to cancel our appt. but I was also needing to cancel it because my husband Les passed away in his sleep two weeks ago. He didn't have heart problems and was pretty healthy except for the PSP crap--vision, balance, etc. but that morning they said his heart was working to hard and just stopped. He was laying in bed right next to me and I didn't feel a thing. He never struggled. I walked him to the rest room at 3pm and walked him back and helped him get into bed and that was the last time I spoke to him. I miss him so much. I know this PSP stuff was getting the best of him but he was still independent and still was hoping for a cure or some type of relief. I am very sad and heartbroken.
Do you have the number for the clinical trial doctor who is the lead researcher?
Thanks,
Nikkie
Nikkie, Les was so lucky to have you by his side throughout his struggle. My condolences for your loss. My name is Bernie. My wife Laurie was diagnosed with PSP 3 years ago when she was 60. Her current physical condition is similar to how you described Les. We just completed phase 1 clinical trial for Salsalate at UCSF in San Francisco. We also did phase 1 C2N at UCSF a year ago. You mentioned research on the use of stem cells in one of your earlier posts. Do you have some information on that research? Thanks
Bernie
Hi Bernie
Thank you for your message and condolences. I miss my Les so much.
Les had alot of leg pain (right hamstring area only) and we were looking for relief for the pain, but we were also hoping that it would help with vision (that did improve because I noticed he started reading the newspaper again) and his speech was clearer after stem cell too. As for the pain--ughhhh, he had little relief but still a big problem. We choose StemGenex in San Diego California after researching what stem cells do to heal the body (there are many positive results for PD patients and also MSA patients) and also from Ketchupman who is also a part of this group--his wife had pain relief in her ankle so we were hoping for pain relief for Les. Stemgenex team was so professional! They harvested healthy stem cells from Les' stomach area and inserted them into his nasal cavity, through IV and directly to the leg where Les had pain. We did stem cell injections mid-April 2016 so we never really got to see its full affect. The people from StemGenex say it takes 6-12 months to really see changes and for stem cells to activate. I hope this information helps. I believe in this treatment and had already told Les that we would do it again in a year, but unfortunately my guy never made it.
I'm curious about Laurie's results with the trial--how has that been going?
Good luck Bernie and hang in there.
Nikkie
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