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Brandon’s MS is extremely aggressive and his doctors fear that he could be as little as six months away from permanent disability. Brandon’s only hope for a normal life is a treatment known as a Hematopoietic Stem Cell Transplant (HSCT). It’s a chemotherapy procedure that will delete Brandon’s current faulty immune system and “reboot” it with his own, bone marrow derived, stem cells. This will lead to an immediate halt of all disease activity and there is a better than 90% chance that Brandon will make a full recovery. Unfortunately, there is now a three year waiting list due to recent media coverage about the success of this treatment (BBC, 60 Minutes, etc.) and patient word of mouth. Fortunately, the hospital that will perform Brandon’s transplant has had an opening this summer, which they have offered him due to his rapidly deteriorating health. HSCT requires 35 days of hospitalization and is expected to cost over $60,000. Insurance does not cover this procedure and these costs are more than Brandon can handle alone.
To help with the financial burden of Brandon’s uninsured expenses, a fundraising campaign in his honor has been established with HelpHOPELive, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax-deductible, are held by HelpHOPELive in the Southeast Stem Cell Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Please consider making a contribution.
It’s too late for this treatment to help me, but it will save Brandon from having the problems I do and allow him to have a normal life. Your contribution, big or small, will make a huge difference and is sincerely appreciated.
Gary Fowler, father
On Monday I find out if HSCT has successfully stopped my multiple sclerosis.
This will be the first MRI that I've done since my treatment a year ago. Around 15% of patients with relapsing-remitting multiple sclerosis will have a relapse after HSCT. I don't have any new symptoms, so the odds are good the test results will be positive.
I'm still recovering, but it's become almost surreal how much my health has improved from where I was a couple of years ago. Fingers crossed everything checks out alright on Monday!
1 year later!
A year ago today, after four days of chemotherapy, I had my stem cell transplant. Even though I was officially diagnosed with MS only a little more than two years ago, I was sick a long time. Out of control lesions all over my face, massive gut inflammation that made me barely able to eat, and severe autonomic dysfunction that got so bad that it made it difficult or even impossible to stand or walk for a year. While recovering from that, I tested positive for lupus and was diagnosed with aggressive multiple sclerosis that was quickly taking my eyesight and would have likely confined me to a walker or wheelchair by now had I not got this treatment. Everything autoimmune, and all born out of the same "bad soup".
And today, looking back, this all feels like it happened to another person. That's not to say that I've completely recovered. My body can be unpredictable sometimes, but the difference is night and day. I can walk, I can run, no more lesions on my face, no more gut problems, I no longer experience crippling fatigue and brain fog, and my eyes have healed. I spent more than half a decade just trying to survive, and now after HSCT, my day is finally not consumed with illness. I'm able to think about my future. I have my life back.
I'm one of the lucky ones. As bad as it was, it could have been so much worse. My dad has been completely paralyzed from the chest down for nine years due to autoimmune disease (MS/NMO). This summer he was diagnosed with stage 4 lymphoma. His cancer was directly caused by the medication his doctor has had him on the last nine years, azathioprine. Because of his paralysis, he's not able to do the chemotherapy he needs to treat his cancer. He has been getting monthly infusions of rituximab, which will hopefully help slow it down.
Had he gotten the same treatment I did a year ago when his problems first started, he would, in all likelihood, be walking today. HSCT was around back then but deemed too dangerous by the medical establishment. Ironically, the same chemotherapy drugs that are used for HSCT, cyclophosphamide, and rituximab, are what he needs today to treat his cancer, but is unable to receive because of the progression of his autoimmune disease. It feels like I won the lottery, while he and so many others have lost.
Millions of people suffer from autoimmune diseases that can be stopped with HSCT, and only a relative handful have been able to be treated. Please help spread the word.
On the 22nd of this month, I am flying back to Moscow for my one-year follow-up MRI. Dr. Fedorenko will compare the results to the MRI I got before HSCT to make sure there is no new disease activity and also to see if my body has been able to repair any of the old damage. I will keep all of you updated on how it goes!
I really want to thank you all again for helping make my treatment possible. It has completely changed my life, and it would not have happened without your support!
My treatment date has changed! The hospital was nice enough to swap my date with a local patient who was scheduled for later in September. This means there is a little more time to get the money together. My new treatment date is September 28th, still very soon! The date can't be changed again.
Here's a video of a BBC news story about someone else that got the same treatment I'm due to receive in a few weeks. If you know anyone else with MS please share it with them. Not enough people know that this treatment is available and works.
The fundraising continues. We are over 65% of the way there! Thank you again, everyone, for all the support. Sorry to cut this short, but I've had terrible neck pain and nausea today, and I'm not feeling well. Hoping to be able to sleep it off.
My dad and I were interviewed by my hometown newspaper in Florida.
It's been 12 days since I got out of the hospital after my last MS attack. Unfortunately, my symptoms seem to be coming back. Most of my legs are numb, my eyes are driving me crazy, and I'm constantly exhausted.
On average MS patients have 1 attack every 3 years. I've had at least 6, and 5 have happened in the last 14 months. That's the equivalent of 18 years worth of MS attacks in a couple years.
In only 12 days, on September 6th, I am scheduled to check in to the hospital to get a breakthrough stem cell transplant that will fix all the health problems I have been dealing with (multiple sclerosis, lupus, etc.).
$30,190 has been raised so far between the HelpHOPELive campaign and PayPal donations!
HelpHOPELive, is a national nonprofit that is audited by the IRS. They have been helping people fundraise since 1983 and all of their financial statements are available online. They maintain the highest possible 4-star rating from the independent charity watchdog Charity Navigator. HelpHOPELive manages all of the funds raised and will only use them to help cover relevant transplant-related expenses.
The really amazing thing is how global the support has been! People from Australia, Austria, Brazil, Canada, Finland, France, Germany, India, Italy, Latvia, Macau, Malaysia, Mexico, Netherlands, New Zealand, Nigeria, Norway, Romania, Russia, South Africa, Spain, Sweden, Switzerland, Thailand, United Arab Emirates, United Kingdom, United States, and Vietnam have donated so far, and that does not include anonymous donations!
Even if you can't make a donation, just spreading the word by sharing the video below, with a personal note, is a huge help.
Thanks again, everyone. This treatment will give me my life back, and none of this would be possible without your support. I'm tremendously grateful.
I'm scheduled for treatment on September 6th. We have 19 days to reach the goal. Thank you for your generosity, everyone. This would not be possible without your support.
I had another MS attack last week. One of the most severe attacks I've had, and I've spent the last few days in the hospital. I lost a lot of strength in my left leg and was about to need a walking cane. Fortunately the double dose of steroids they gave me in the hospital brought the strength back in my leg. Steroids are only a temporary fix, but they should keep me glued together for a few more weeks until I'm scheduled to begin treatment in September.
A large donation was made on Friday, which will be added to the total on Monday. That should get us close to halfway to the goal. I really can't delay getting this treatment and certainly not for a year and a half or two years, which will be the case if I we are unable to raise the funds for September in time.
If you are on Facebook, please share the video my dad posted with a personal note. With over 20,000 views, that seems to be one of the most effective ways of spreading the word. Here's the link: www.facebook.com
The goal is definitely within reach. We have just over 3 weeks. Thank you all so much for your support through this.
People have been asking why the fundraising total has not increased. It's because HelpHOPELive updates the total once a day (Monday - Friday) at the end of business, US time. Your donations are definitely being received. I can't thank you enough!
I'm sorry I haven't updated in a while. My health has really been a mess lately. I was down to 40% vision in my right eye a few weeks ago. It's improving now after more steroids. I've also been having more leg problems and autonomic issues (what left me bed ridden for much of 2014). So yeah, it's been a struggle the last couple weeks. The last couple days have been better though.
I talked to the hospital about possibly delaying my treatment date, but unfortunately, it just isn't possible. The waiting list for this treatment is very long. I'm scheduled for September 6th, barely a month away.
If we can't get the money together by then, the earliest possible treatment date will be the end of 2017. Considering the speed my health is crashing, I may not be in any shape to even get the treatment by then.
So begins an all out push to get the money together. I'm selling everything I can of value to help pay for the costs. Anything you can do to help, be it a donation or even just helping spread the word, would be greatly appreciated. It all adds up.
This really is a difficult thing to wrap my head around. I never imagined I would be in a position like this, but here I am.
Thanks again for your all your support, everyone! I feel lucky that I even have this chance to get this treatment and have a normal life. I really am very grateful.
Thank you, everyone! I really appreciate your support! A few people have asked whether this is an "all or nothing" campaign. It's not! Even if the goal is not reached, the money raised will still go towards my medical costs.
I'm told the first 30% is the hardest to raise, but most people that get there reach their goal.
We are working on videos that will better explain the situation and the treatment. The first should be done this week.
Oh, and the fundraising total on the page is not updated in real time. It's manually updated at the end of each business day once donations clear (checks take longer).
Thank you again!
HSCT is the single most effective treatment for multiple sclerosis. It works by literally wiping and rebooting your immune system. Thousands of MS patients from all over the world have been cured with HSCT, but unfortunately it is not covered by insurance. I have been on a waiting list since last year for this treatment and my number has come up.
Typically it's a 3 year wait to get this treatment, but due to the severity my MS and other autoimmune issues (lupus, etc.) they have fast tracked me for treatment so that I will not be permanently disabled.
Here are some videos that will tell you more about this treatment:
This is my chance to have a normal life. Thank you helping make this possible!
I was diagnosed in March 2014 but was running around from doctor to doctor before I finally got a result that I was free from Multiple sclerosis (MS). Mine started on top and progressed into the bottom. I could walk very little but needed assistance as I have no balance. It is sad all the time that we thought this disease has no cure with all the technology we have while there are some formulas that can reverse all MS symptoms and get rid of it . I’m passing this info to anyone at there because ( www multivitamincare .org ) has the right cure and caregiver to this disease ….I took various supplements, medicine prescribed by neurologist,PCP and physiotherapy still the disease is was progressing very fast until the Multiple sclerosis (MS) herbal remedies from that company .
Hey Brandon, This is going to be a good thing. I feel really excited about it. I love you Son.
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Brandon Fowler
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087
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