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Dear Ms. Newhouse,                                      ALSA President & CEO

1/25/2015

24 Comments

 
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







24 Comments
Bernard Leddy
1/26/2015 06:51:25 am

GM604 should be made available to all ALS sufferers who would like to use it on a worldwide basis. Some hope is better than no hope.

Reply
keith miner
1/26/2015 07:16:38 am

perfectly written. well said. I've written to her n a very similar way. the fact that we have to beg the alsa makes me sick. I have a foundation called racers against als. If your family ever needs any financial help with fighting als let me know

Reply
J.O. Wallace
1/26/2015 07:27:10 am

Thank you for this beautiful critique. I have ALS and fully support FDA accelerated approval. I'll be dead before the end of the year if I don't get treatment soon. So many people have been very kind to me as I fall into the abyss. Your email is the one i wanted to write and am so grateful for you standing up for us. I hope you write an equally brave letter to the FDA. I think they want to approve of the accelerated program. The research community is competitive and risk avoidant. Your husband and I have nothing to lose and willingly want GM604. If it's not the breakthrough drug nothing really changes, it would be money well spent and Newhouse's standing well risked. ALSA has to blow off corporate speak and come out swinging like Lou Gehrig. I am on FB.

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Debbie Gauci
1/26/2015 07:46:23 am

I applaud you Jennifer. Thank you for writing this. You have nailed it perfectly. I only hope they listen. Time is not on pALS side at all. We need this now!

Reply
Maris
1/26/2015 08:12:13 am

Thanks for taking the time to write this letter. My husband was diagnosed 2011 and it has been a tough and lonely road. I do pray that every organization that has collected funds to find a cure will get together at this crucial moment for the sake of so many suffering this horrible disease!

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Ron Collum
1/26/2015 08:26:34 am

I have ALS and fading away.
Thank You for your needed support

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WALTER DURK link
1/26/2015 08:51:44 am

This letter is good and my thanks to Jennifer. I have ALS & I just don't get it. I read yesterday how Ebola patients are due to receive more experimental drugs. Now, we don't have any, just Riluzole which everyone knows has a minimal effect. So since they say there have no detrimental effects from GM 604 & some positive results, then what is the problem with letting us use it? Their reluctance makes no sense at all relative to how other diseases are approached. I will very annoyed with this whole ALSA/FDA bureaucracy if they don't approve the use of GM 604 within 60 days from now.

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Moreno Miranda Serrani
1/27/2015 01:48:47 am

+1!! Genervon have the 'morally' to ask the FDA for a 'AAP' ALSA NO! Insted to say to Genervon hello guys we have a lot of money let's ask FDA an AAP and if will be positive we can pay you'r drug and send to all Hospital center for a Phase 4 of the Trial!

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Loretta Butala
1/26/2015 10:35:40 am

I applaud you Jennifer. Thank you for writing this. You have nailed it perfectly. I only hope they listen. We need this NOW NOW NOW!!!!

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Jamie Eitel
1/26/2015 11:17:41 am

Jennifer - Thank you! You 110% nailed it from the perspective of PALS & CALS living with ALS now & all those that have gone before us. ALSA needs to get behind us & listen to the collective 'voice' they represent & use the funds that same 'voice' has provided. In honor of my most amazing father & grandfather to my children - I will fight right beside you!

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Ramona Aguilar-Zoria
1/26/2015 11:34:07 am

i was diagnosed with this killer ALS in July 2013. My journey is at the infant stage, I'm slowly diminishing like the rest of you. Thank you for the support you are showing us ALS suffers.

Reply
Moreno
1/27/2015 02:02:07 am

Hi Jennifer thank you very very much for this great letter! This is my email to Barbara that i wrote:
From Moreno M. Serrani Italy
Jannuary 25, 2015
Dear Barbara,
My name is Moreno, I’m male, 46 years old and till on the age of 39yo in perfect shape/health and very, very active way of living and personality, on 2008 start the nightmare, the first clumsiness symptom begging on my left foot and on the index finger. I went immediately in NSY Doc. Because of a past vertebra fracture from C4 to C6 occurred in 1986 and a temporary quadriplegia due a SCI (Spinal Cord Injured) after an examination, MRT, CT, X-rays and many, many more exams I had the result from my NSY Dr., cervical stenosis, the C5 Vertebra body produce pressure on the spinal cord. After 2 Anterior Cervical Corpectomy Spine Surgery in C5 on 08/11, in C5-C6 on 12/10 and 4 years of suffering, clumsiness and many falls, helpless witness of the deterioration of my body functions I get ‘finally’ (if i can call like that) the diagnosis on the summer of 2013, MND/ALS.
Anyway isn’t my intention to boring you with my personal anamnesis, I just would like to put your attention and make some reflections on the Trial and future study of GM604. I’m not a Dr, a Clinical Researcher or a Scientist but as a Human being I ask myself how is possible to study the Trial Phase 3 for an example on thousands ALS’s patient, 500 with Placebo, 500 with GM604?
On the end of this hypothetical study of ca 2-3 years maybe will be 350 of 500 treat with placebo Dead instead on thus on GM604’s Drug that maybe are ‘just’ 200 dead, the obvious question, WICH scientist, Dr, Political, FDA member, CEO and so on can take the responsibility of 150 Humans dead? And what about the rest of us that didn’t participate on the trial at all? Maybe the 85% of as with ALS are already Dead till the end of the study and actually I’m sure most of ALS patients even will haven’t or will not know the result of the Trial!!! If the study in vitro/animal of GM6 Drug already demonstrate some good results or some incontrovertible evidence and can give us the hope that exist finally a cure against ALS then why in name of the ‘FDA science’ take away this hope to all the people that have to fight every day with this terrible disease??
Much love

Reply
Jennifer Dean
1/28/2015 03:05:19 am

Dear Jennifer, I am a Brit living in France and have Bulbar ALS. I have just become a grandmother and it breaks my heart to think I won't see my beautiful grandsons grow up. Thank you so much for all you are doing on behalf of the ALS Community Worldwide. My family and I are doing all we can to spread the word and get our friends, family and their friends to sign the petition here in France and the UK. Kindest regards Jenny Dean

Reply
Eleanor Moore
1/28/2015 03:27:26 am

Bravo for composing the perfect letter to Barbara Newhouse.

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Dean Kaumans
1/31/2015 12:02:55 am

I found out about GM6 October 19, 2014 and I contacted them immediately. They told me to contact the FDA as they were interested in making it available to ALL ALS patients. I find it inexcusable that the ALS Association was not aware of GM6 and did not contact them until recently. More than 3 months passed…3 months of further deterioration means untold hardships and pain for my wife and many ALS patients and their families, and possible death for many. I really expect more from an organization that purports to represent their own members. They should be out in front leading the charge by making contacts with the company and making this medication available to all that want it. It makes me wonder if ego and financial considerations are behind their lack of involvement and support.

Reply
Moreno Miranda Serrani
2/1/2015 01:54:57 am

+++1

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Desider
1/31/2015 12:48:35 am

Guys/Ladies - who taught you how to write?

A CEO dealing with $200m in new funding has limited time & lots to decide.

Say what you need short, clear, simple.
(yeah, avoid "concisely" & anything that muddies your text)

If you're going to insult, make sure your insults make sense and move them to action - there are 10 million+ self-righteous a-holes on the internet - try to stand out from that crowd.

Dear Ms. Newhouse -

I know you have a lot of priorities to juggle, but with the promise of GM104 & the chance to speed it to help patients now, we beg of you to support an FDA AAP & Phase 4 process.

Isn't the push for near-term miracles what Ice Bucket Challenge was about? We know GM104 is not certain, but for many of us, death in 1 year is.

Millions of us - PALS and family and donors - would be grateful. IBC - I Believe in a Cure.

Best

Reply
Barbara
2/8/2015 01:41:39 pm

Real change. Real cures now!! Give us gm604! prove that profits before cures is not true! come on FDA!

Reply
Alexander Staff
2/11/2015 10:43:28 pm

Has anyone considered going around the regulations? Is there a way to get GM604 if the transaction takes place in Mexico or another country?

Reply
Maryann Moszczynski
2/12/2015 02:12:44 pm

Dear Jennifer,

I am cheering and crying at the same time. Your letter is profound! It's everything I wish I could say so eloquently.

In Sept. 2014, my family and I went to Philadelphia for an ALS conference. Lucie Bruijn, one of the chief scientists, was there also. Barbara Newhouse was there, too. The scientists gave us no hope, explaining that it takes about 10 years to get a drug to market, between research and FDA approval. We left devastated. My husband discovered Genervon and their GM604 on the net. I immediately emailed Barbara and the president of the Philadelphia ALSA, along with Lucie Bruijn. The PA president was kind enough to answer, saying the scientists would decide about GM604. No one else emailed me. We also introduced our PA neurologist to GM604. I later asked her if she had done anything proactively on our behalf (ALS victims). She just said, No. She didn't have anything to do with that. Absolutely NO care factor, no concern.

I don't know how Barbara Newhouse can sleep at night, or for that matter any of the higher ups in the ALSA organization. We are Begging for our lives. Begging.

I still have a wonderful brain, I can walk, and use my left arm and hand. I cannot eat, blow my nose, swallow, kiss, or speak. I volunteered to take a 45 minute Brain MRI. When my doctor saw the pictures, she said that I had a beautiful, young brain. I am in my late 60s.

I want to try GM604, along with many others. Let's hope someone wakes up and hears our pleas for life.

Thank you kindly for your letter. Our loved ones mean the world to you and me, so we should keep writing letters, praying, and doing the best we can. Keep the faith, Jennifer.

Sincerely,

Maryann M.

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Barbara
2/28/2015 10:10:48 am

the actions of ALSA have convinced me that profits before cures is true! I tried to ask for ice bucket money for SVF a stem cell procedure. Harvests cells from your own fat and re injects stem cells. They told me no grants to individuals, only nonprofits research organizations and institutions. They had no knowledge of SVF. It costs 9,000 dollars. A drop in the bucket for them pun intended! the lack of enthusiasm they have shown toward gm6 is appalling. #fdahope4als where is our right to choose, right to try, right to life liberty and the pursuit of happiness! Those who oppose accelerated access should be charged with our murders cuz they're signing our death sentences!

Reply
Dwayne Merritt
4/14/2015 03:00:53 am

I Have ALS and I support GM604 and I will do what ever it takes to get this Bill Passed If you have a Heart you will to

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stacey wathan
2/10/2017 08:17:41 pm

My brother David has been dgx with ALS for a little more than a year. He showed signs of it for close to three years and no Doctor was able to figure out what was wrong, until my sister whom he had been living with kept trying to bring him to each doctor ---- finally found a doctor who recognized almost immediately that he had ALS. He has been taking medication that was made available to him only through a medical grant funding from those who have donated to the continuing research for a possible cure. He has slowed down in the progression, but without side affects. My hopes and prayers are that, you can also contact the Doctor for possible cure if you have ALS or any relative suffering for same disease here is their email healthmedlab@gmail.com

Reply
Roger link
12/31/2020 10:28:29 am

Thanks foor a great read

Reply



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