Dear Barbara Newhouse,
My name is Jennifer Lange. I am just an ordinary woman living in Pennsylvania, raising my children Sophia and Alex with my husband Bert, who happens to have Amyotrophic Lateral Sclerosis. The last fact is what brings you and I together, it is why in this big world that I have reason to Google your name, and try to figure out exactly what role you play in my tiny life. Prior to my husband being diagnosed, I was not involved with ALS. I am sad about that because I feel that had I been aware I would have been involved even before my husband's diagnosis, but that goes to show how poorly aware so many are of this horrific disease. I Googled your name this morning to see if I could learn more about you before I express my opinion (and it is a strong one) to you and anyone who will listen for that matter. I see that you hold a Bachelor's degree in Social Work...so do I. I see you hold a Master’s degree in Health Care Administration; I happen to be a Registered Nurse who currently works as a Director of Nursing. We seem to have a lot in common regarding these areas. I hope you have not lost your perspective on the human side of your career. I have served my patients and their families in both capacities and know that it can be a difficult balance, but if you stay focused you can absolutely hold a common middle ground. Your resume is extensive and you seem very savvy on the business-end of things. No matter what the business is, I do know that in both social work and medicine the patient always comes first. They are the reason for our jobs and the purpose of our existence. I am sure you can imagine that with my background and the fact that one of the people I love most in this world has ALS, I have quickly become a fierce advocate for this disease and the people who suffer from it. I am a strong woman, a fighter. I feel that I could not have been handed this terrible situation I have found myself in if I was not one hundred percent capable of handling it. With that said, I hope that you will please take the time to read my letter and think seriously about my opinion, one that I am certain I share with others who are in a very similar situation as my family and me. One more thing I think is important for you to know about me is that I am fair; I look at all sides of a situation. I have experience in business and management, and I know that one's perspective needs to remain clear. I fully understand that there are policies and rules that need to be followed; I understand that there are reasons behind these policies and rules. I have an understanding of medicine and I ask a lot of questions before I form an opinion. While I am personally involved with ALS, I am truly personally involved in all of the patient situations I have found myself in-as you know you cannot uphold the role of a social worker or work in medicine and not have a heart. I state the above because I do not want you to disregard this letter thinking that I am a woman who has lost sight and just desperate for a cure for ALS at all costs. Thank you in advance for reading on.
I follow everything that has happened, is happening, and will happen with ALS. My family has a story like thousands of others. I have read any and all information that I can get my eyes on since the first time my husband told me about the stiffness he was feeling in his legs. I am a nurse and always assume the most serious of scenarios, until I calm down and become more realistic; in my case ALS was the reality. By this point I am certain you already know the reason for my letter. Ms. Newhouse, it is because of the recent conversation about Genervon and GM604, and where you and the ALSA stand on the support of those living with ALS. I read your mission, vision and values, and above all else is those living with ALS and their families; they come first in everything that you do. I have seen a lot of negative press about the ALSA since the explosion of the Ice Bucket Challenge. I have been reluctant to pass judgment as I was sure that your organization and you would be following your own values and spending that waterfall of funds wisely. I was confident that the person living with ALS came first so I stayed quiet, as I wanted to give you a chance to prove yourself, to show all of us that you would support this community and the crucial funds would be used to find a treatment or even a cure. I am sure you want that cure just as much as the rest of us, right?
My husband and I have been following research from day one. We fully and actively support research and medicine. My husband has participated in four trials so far in the short year since he has been diagnosed; he knows that it’s important for him to do his part to help others. We know enough to realize that ALS is so much bigger than us. My husband is willing to do what it takes to find a treatment or cure even if that means personal risks, and I support him. We were excited and hopeful when we heard about GM604 and it's promise. We signed the petition for it's acceleration because we fully understand that by the time it gets through all of the red tape and rules my husband will likely be dead, and that fact makes it worth the risk to try and fight for it's acceleration. We want nothing more than for GM604 to be granted the “Accelerated Approval Program” by the FDA.
I followed the criticism that you and the ALSA received from the ALS community because your statements seemed rehearsed and shallow; the ALS community clearly didn't feel that you stood behind us, that we had your full support to get the drug accelerated. I read your statement on January 23, 2015 and respectfully, I found myself chuckling a bit as I read it; it seemed to me that the words of your mission, vision and value were simply rearranged. I am not sure, even from our stories, that you can understand the life-altering significance of our situation. You said “as best I can” that you understand..what the ALS community is really feeling is that "as best I can" is not good enough. What we want is the ALSA's full support on this; we want you to go out on a limb and support that WE are YOUR priority as you stated. We want you to back that petition. We want you to take a chance. Bert and I have spoken to many neurologists as we participate in trials and give our blood (and yes I give mine too) for research. We understand that you are afraid to support something like this-what if it doesn't work? What if it isn't completely safe? What if someone dies? What if, what if? But what if it does work? I can only speak for myself and my family when I say it is worth the risk to us. We are up against a huge ticking clock and all we have at the end is death. We don’t just need you to listen, we need you to ACT. We need you to dig deep and really place yourself in the shoes of every patient living with ALS. I understand that there are many factors and red tape involved, but there is not time to have meetings about building collaborations. Please-just speak up on our behalf. Take our funds and make a difference, mainly from the ice bucket challenge; it was our friends and families who dumped those buckets, emptied their pockets and gave to save our loved ones from this disease. They trusted their hard-earned funds to you, to follow through and help ensure that ALS gets cured. Please remember this, follow through and support us.
As I read Genervon’s response to your statement you put out on behalf of the ALSA this morning I am disappointed with the ALSA. Genervon's response reads as follows:
“Genervon received only one phone call two weeks ago from an ALSA policy group individual who promised to call Genervon back after he talked to senior management but never did. We told him Genervon broke with tradition and posted the details of Phase 2a trial data available in our website and press releases. “Genervon received an email from Lucie Bruijn, of ALSA who offered Genervon an invitation to consider an ALSA multi-million dollar grant to conduct a second Phase 2 trial on January 20. Genervon said “no thanks” in return email within hours.
“Genervon refused to be tempted by grant money and digress back to more Phase 2 trials and waste more time while ALS patients are dying a horrible death daily. It is morally incomprehensible.
“Genervon is having an end of Phase 2 meeting with FDA in February. For the sake of the hundreds of ALS patients writing to Genervon who will be dead by the time we finish Phase 3 trial, we asked FDA to consider granting GM604 “Accelerated Approval Program” with post-marketing Phase 4 requirement so that all ALS patients can receive legal GM604 treatment now while they are alive, not years later.
“The several grassroots campaigns emerged in the last couple of weeks are overwhelmingly seeking the opportunity to chose to receive GM604 treatment legally.”
(taken from Nicholas Grillos Petition Update January 24, 2015)
Your bio says that your specialty is "aligning the needs of a varied group of constituents with the overall mission and working with a grassroots chapter and volunteer network, while maintaining a strategic business operations focus". I know you are likely afraid Ms. Newhouse, as you need to balance your human social work side with your administrative business side, and the ALSA wants to be sure they get some credit if this works. I know that many of the doctors and scientists do not want to put themselves in the situation to give false hope; some of you have been working your whole career to find something to treat or cure this disease. Excuse my language but holy shit what if this is it?! What will happen next-I am sure these are exciting yet scary thoughts. But your focus MUST remain on US and the people who are dying from ALS. If you want to be remembered, if you want credit, the way to receive it is not another Phase 2 trial. People currently living with this disease DO NOT have time for that. Support us, fight for us, advocate for us. Even if this doesn't work you will have gained so much. You will have gained the trust of ALL those living with ALS who shared their story with you. We will know that you have our back, that you have remained true to your word.
Ms. Newhouse, I don't know everything but I know this for certain. I love my husband, I will advocate for him and for every person living with ALS and their families. Why? Not only because this is personal to me but because I am a social worker and a nurse, and I took an oath that I plan to fulfill. I understand life and death long before this disease came into my life. I have held many hands of dying people and hugged their families. I have lost many nights' sleep over my patients and their families, all while making sure I upheld my role. I now have another role with ALS and it’s a personal one. I advocate on my own time and do not receive compensation for my blog or Facebook community support page. I write this letter on my own time, when I should be at the grocery store or doing laundry before my work week begins. I write it because GM604 needs acceleration for the sake of all those living with ALS. Ms. Newhouse, please do the right thing and support our campaign. It truly is a matter of life and death.
Sincerely,
Jennifer E. Lange
My name is Jennifer Lange. I am just an ordinary woman living in Pennsylvania, raising my children Sophia and Alex with my husband Bert, who happens to have Amyotrophic Lateral Sclerosis. The last fact is what brings you and I together, it is why in this big world that I have reason to Google your name, and try to figure out exactly what role you play in my tiny life. Prior to my husband being diagnosed, I was not involved with ALS. I am sad about that because I feel that had I been aware I would have been involved even before my husband's diagnosis, but that goes to show how poorly aware so many are of this horrific disease. I Googled your name this morning to see if I could learn more about you before I express my opinion (and it is a strong one) to you and anyone who will listen for that matter. I see that you hold a Bachelor's degree in Social Work...so do I. I see you hold a Master’s degree in Health Care Administration; I happen to be a Registered Nurse who currently works as a Director of Nursing. We seem to have a lot in common regarding these areas. I hope you have not lost your perspective on the human side of your career. I have served my patients and their families in both capacities and know that it can be a difficult balance, but if you stay focused you can absolutely hold a common middle ground. Your resume is extensive and you seem very savvy on the business-end of things. No matter what the business is, I do know that in both social work and medicine the patient always comes first. They are the reason for our jobs and the purpose of our existence. I am sure you can imagine that with my background and the fact that one of the people I love most in this world has ALS, I have quickly become a fierce advocate for this disease and the people who suffer from it. I am a strong woman, a fighter. I feel that I could not have been handed this terrible situation I have found myself in if I was not one hundred percent capable of handling it. With that said, I hope that you will please take the time to read my letter and think seriously about my opinion, one that I am certain I share with others who are in a very similar situation as my family and me. One more thing I think is important for you to know about me is that I am fair; I look at all sides of a situation. I have experience in business and management, and I know that one's perspective needs to remain clear. I fully understand that there are policies and rules that need to be followed; I understand that there are reasons behind these policies and rules. I have an understanding of medicine and I ask a lot of questions before I form an opinion. While I am personally involved with ALS, I am truly personally involved in all of the patient situations I have found myself in-as you know you cannot uphold the role of a social worker or work in medicine and not have a heart. I state the above because I do not want you to disregard this letter thinking that I am a woman who has lost sight and just desperate for a cure for ALS at all costs. Thank you in advance for reading on.
I follow everything that has happened, is happening, and will happen with ALS. My family has a story like thousands of others. I have read any and all information that I can get my eyes on since the first time my husband told me about the stiffness he was feeling in his legs. I am a nurse and always assume the most serious of scenarios, until I calm down and become more realistic; in my case ALS was the reality. By this point I am certain you already know the reason for my letter. Ms. Newhouse, it is because of the recent conversation about Genervon and GM604, and where you and the ALSA stand on the support of those living with ALS. I read your mission, vision and values, and above all else is those living with ALS and their families; they come first in everything that you do. I have seen a lot of negative press about the ALSA since the explosion of the Ice Bucket Challenge. I have been reluctant to pass judgment as I was sure that your organization and you would be following your own values and spending that waterfall of funds wisely. I was confident that the person living with ALS came first so I stayed quiet, as I wanted to give you a chance to prove yourself, to show all of us that you would support this community and the crucial funds would be used to find a treatment or even a cure. I am sure you want that cure just as much as the rest of us, right?
My husband and I have been following research from day one. We fully and actively support research and medicine. My husband has participated in four trials so far in the short year since he has been diagnosed; he knows that it’s important for him to do his part to help others. We know enough to realize that ALS is so much bigger than us. My husband is willing to do what it takes to find a treatment or cure even if that means personal risks, and I support him. We were excited and hopeful when we heard about GM604 and it's promise. We signed the petition for it's acceleration because we fully understand that by the time it gets through all of the red tape and rules my husband will likely be dead, and that fact makes it worth the risk to try and fight for it's acceleration. We want nothing more than for GM604 to be granted the “Accelerated Approval Program” by the FDA.
I followed the criticism that you and the ALSA received from the ALS community because your statements seemed rehearsed and shallow; the ALS community clearly didn't feel that you stood behind us, that we had your full support to get the drug accelerated. I read your statement on January 23, 2015 and respectfully, I found myself chuckling a bit as I read it; it seemed to me that the words of your mission, vision and value were simply rearranged. I am not sure, even from our stories, that you can understand the life-altering significance of our situation. You said “as best I can” that you understand..what the ALS community is really feeling is that "as best I can" is not good enough. What we want is the ALSA's full support on this; we want you to go out on a limb and support that WE are YOUR priority as you stated. We want you to back that petition. We want you to take a chance. Bert and I have spoken to many neurologists as we participate in trials and give our blood (and yes I give mine too) for research. We understand that you are afraid to support something like this-what if it doesn't work? What if it isn't completely safe? What if someone dies? What if, what if? But what if it does work? I can only speak for myself and my family when I say it is worth the risk to us. We are up against a huge ticking clock and all we have at the end is death. We don’t just need you to listen, we need you to ACT. We need you to dig deep and really place yourself in the shoes of every patient living with ALS. I understand that there are many factors and red tape involved, but there is not time to have meetings about building collaborations. Please-just speak up on our behalf. Take our funds and make a difference, mainly from the ice bucket challenge; it was our friends and families who dumped those buckets, emptied their pockets and gave to save our loved ones from this disease. They trusted their hard-earned funds to you, to follow through and help ensure that ALS gets cured. Please remember this, follow through and support us.
As I read Genervon’s response to your statement you put out on behalf of the ALSA this morning I am disappointed with the ALSA. Genervon's response reads as follows:
“Genervon received only one phone call two weeks ago from an ALSA policy group individual who promised to call Genervon back after he talked to senior management but never did. We told him Genervon broke with tradition and posted the details of Phase 2a trial data available in our website and press releases. “Genervon received an email from Lucie Bruijn, of ALSA who offered Genervon an invitation to consider an ALSA multi-million dollar grant to conduct a second Phase 2 trial on January 20. Genervon said “no thanks” in return email within hours.
“Genervon refused to be tempted by grant money and digress back to more Phase 2 trials and waste more time while ALS patients are dying a horrible death daily. It is morally incomprehensible.
“Genervon is having an end of Phase 2 meeting with FDA in February. For the sake of the hundreds of ALS patients writing to Genervon who will be dead by the time we finish Phase 3 trial, we asked FDA to consider granting GM604 “Accelerated Approval Program” with post-marketing Phase 4 requirement so that all ALS patients can receive legal GM604 treatment now while they are alive, not years later.
“The several grassroots campaigns emerged in the last couple of weeks are overwhelmingly seeking the opportunity to chose to receive GM604 treatment legally.”
(taken from Nicholas Grillos Petition Update January 24, 2015)
Your bio says that your specialty is "aligning the needs of a varied group of constituents with the overall mission and working with a grassroots chapter and volunteer network, while maintaining a strategic business operations focus". I know you are likely afraid Ms. Newhouse, as you need to balance your human social work side with your administrative business side, and the ALSA wants to be sure they get some credit if this works. I know that many of the doctors and scientists do not want to put themselves in the situation to give false hope; some of you have been working your whole career to find something to treat or cure this disease. Excuse my language but holy shit what if this is it?! What will happen next-I am sure these are exciting yet scary thoughts. But your focus MUST remain on US and the people who are dying from ALS. If you want to be remembered, if you want credit, the way to receive it is not another Phase 2 trial. People currently living with this disease DO NOT have time for that. Support us, fight for us, advocate for us. Even if this doesn't work you will have gained so much. You will have gained the trust of ALL those living with ALS who shared their story with you. We will know that you have our back, that you have remained true to your word.
Ms. Newhouse, I don't know everything but I know this for certain. I love my husband, I will advocate for him and for every person living with ALS and their families. Why? Not only because this is personal to me but because I am a social worker and a nurse, and I took an oath that I plan to fulfill. I understand life and death long before this disease came into my life. I have held many hands of dying people and hugged their families. I have lost many nights' sleep over my patients and their families, all while making sure I upheld my role. I now have another role with ALS and it’s a personal one. I advocate on my own time and do not receive compensation for my blog or Facebook community support page. I write this letter on my own time, when I should be at the grocery store or doing laundry before my work week begins. I write it because GM604 needs acceleration for the sake of all those living with ALS. Ms. Newhouse, please do the right thing and support our campaign. It truly is a matter of life and death.
Sincerely,
Jennifer E. Lange
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