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Sean Baum goes by many names. Son, husband, brother, dad, cousin, son-in-law, brother-in-law, co-worker. And the less formal--Smart Ass, Star Wars geek, Baumer, Toadster, Rap City, Vodka Lover, Kappa Sig, Golf Hacker.
It's a new title that needs your help--ALS Survivor!
Sean's been experiencing health issues for the last 2 1/2 years with the diagnosis of ALS (Lou Gehrigs disease) coming just a month ago. Unfortunately it is a fatal condition that has very few treatments and they only slow the progression. There are quite a few promising new treatments at this point that are not FDA approved and therefore not covered by insurance. Several are promising new drugs but many are holistic approaches to reversing ALS. 48 ALS reversals have been documented and Sean wants to be number 49 and that is where you can help. Here is some of the things that need funding to stop or slow the progress of the disease or support Sean in this fight:
1. Stem cell Treatment is showing a lot of promise, but is stuck in stage 3 trials and must be approved by the FDA; this won't be until the end of the year potentially, if at all. As with other drugs and treatments out there, many other countries have approved it much sooner, but it comes at a price. Many have gone to Guadalajara in Mexico but it costs $33,000 dollars per treatment and you need to go every six weeks. Sounds expensive but much cheaper than the program in South Korea that's $100,000 thousand dollars per treatment. Sean has spoken to several ALS patients that have had positive results from this treatment.
2. As mentioned above there have been 48 reversals of ALS documented by a leading ALS doctor at Duke University. At the heart of the reversals has been testing and supplements to personalize the approach of slowing or stopping ALS. This, of course, is not the route accepted my all western medicine, so it is not covered by medical insurance and can be expensive. It involves functional doctors, testing, and supplements which can add up to thousands per month. Sean committed to this path for the past two years and has lost 40+ pounds and is healthier because of it.
3. As mobility becomes much more of a challenge for Sean, he has to invest in equipment and modifications for his two story home. While insurance covers some of the equipment, it doesn't cover all of the modifications needed in his home. The hope is that the treatments slow or stop the progression leading Sean to not need these modifications, but only time will tell. Sean is currently using a walker and struggling more with walking every day.
We all share one thing--our love of Sean and our wish to support him in these trying times. Many have said that the reason we don't have a cure for ALS is a money problem; the research is not funded well as ALS only impacts approximately 15,000 to 30,000 Americans. Sean, whom is reviewing many current drug trials, is locked in on making his journey contribute to the future cure of ALS. One other way to help is political advocacy as there are restrictions on promising treatments and how they run clinical trials; typically 1/2-1/3 of patients in the trials receive the placebo, even through ALS is a terminal diagnosis. Sean is committed to advocacy and wants you to help out. See several bills in the House and Senate that need to be passed ASAP and need your support:
https://iamals.org/promising-pathway-act/
https://iamals.org/actforalspetition/
Sean, Jamie, McKenna, and Colby will forever be grateful for your love and support! The fight begins now and the positivity and love will help them get through these trying times.
It's a new title that needs your help--ALS Survivor!
Sean's been experiencing health issues for the last 2 1/2 years with the diagnosis of ALS (Lou Gehrigs disease) coming just a month ago. Unfortunately it is a fatal condition that has very few treatments and they only slow the progression. There are quite a few promising new treatments at this point that are not FDA approved and therefore not covered by insurance. Several are promising new drugs but many are holistic approaches to reversing ALS. 48 ALS reversals have been documented and Sean wants to be number 49 and that is where you can help. Here is some of the things that need funding to stop or slow the progress of the disease or support Sean in this fight:
1. Stem cell Treatment is showing a lot of promise, but is stuck in stage 3 trials and must be approved by the FDA; this won't be until the end of the year potentially, if at all. As with other drugs and treatments out there, many other countries have approved it much sooner, but it comes at a price. Many have gone to Guadalajara in Mexico but it costs $33,000 dollars per treatment and you need to go every six weeks. Sounds expensive but much cheaper than the program in South Korea that's $100,000 thousand dollars per treatment. Sean has spoken to several ALS patients that have had positive results from this treatment.
2. As mentioned above there have been 48 reversals of ALS documented by a leading ALS doctor at Duke University. At the heart of the reversals has been testing and supplements to personalize the approach of slowing or stopping ALS. This, of course, is not the route accepted my all western medicine, so it is not covered by medical insurance and can be expensive. It involves functional doctors, testing, and supplements which can add up to thousands per month. Sean committed to this path for the past two years and has lost 40+ pounds and is healthier because of it.
3. As mobility becomes much more of a challenge for Sean, he has to invest in equipment and modifications for his two story home. While insurance covers some of the equipment, it doesn't cover all of the modifications needed in his home. The hope is that the treatments slow or stop the progression leading Sean to not need these modifications, but only time will tell. Sean is currently using a walker and struggling more with walking every day.
We all share one thing--our love of Sean and our wish to support him in these trying times. Many have said that the reason we don't have a cure for ALS is a money problem; the research is not funded well as ALS only impacts approximately 15,000 to 30,000 Americans. Sean, whom is reviewing many current drug trials, is locked in on making his journey contribute to the future cure of ALS. One other way to help is political advocacy as there are restrictions on promising treatments and how they run clinical trials; typically 1/2-1/3 of patients in the trials receive the placebo, even through ALS is a terminal diagnosis. Sean is committed to advocacy and wants you to help out. See several bills in the House and Senate that need to be passed ASAP and need your support:
https://iamals.org/promising-pathway-act/
https://iamals.org/actforalspetition/
Sean, Jamie, McKenna, and Colby will forever be grateful for your love and support! The fight begins now and the positivity and love will help them get through these trying times.
