Topic

rare disease

21 petitions

Update posted 1 month ago

Petition to Bundesamt für Gesundheit

Ein Leben ohne Sonne! Vivre sans soleil! Vivere senza sole! Living without sun!

Pour le FRANCAIS voir plus en bas, per l’ITALIANO vedere più in fondo, for ENGLISH see further below   DEUTSCH EIN LEBEN OHNE SONNE! So müssen Patienten leben, die an Erythropoietischer Protoporphyrie leiden. Helft ihnen, die Behandlung zu bekommen, die es ihnen erlaubt aus dem Schatten zu treten. Hallo, hast du jemals daran gedacht, ein Leben ohne die Sonne zu führen? Nur der Gedanke daran scheint unmöglich, oder? Aber jetzt werde ich dir ein Geheimnis enthüllen…es ist nicht ein Alptraum, aus dem wir wieder wach werden können, sondern unser wahres Leben seit der Kindheit. Wir sind eine Gruppe von Patienten mit Erythropoietischer Protoporphyrie (EPP), einer sehr seltenen Krankheit. Sie erlaubt es uns nicht normal zu leben, weil unser Blut krank ist und in der Sonne brennt, die Haut wird von innen zerfressen. All dies geschieht in weniger als 5 Minuten Exposition gegenüber Sonnenlicht, und auch künstliche Lichtquellen sind schädlich. Ich weiss was du jetzt denkst…Urlaub, wie geht das? Das ist nicht das Problem. Es geht um das, was man täglich an einem sonnigen Tag macht: die Fenster am Morgen zu öffnen, um Licht hereinzulassen, in der Sonne zu Fuss zum Frühstück zu gehen, mit dem Auto oder Bus zur Arbeit zu fahren oder die Kinder zur Schule zu bringen, in hellen, lichtdurchfluteten Umgebungen arbeiten zu können, deine Arbeit oder berufliche Ausbildung in einer solchen Umgebung überhaupt auszuüben, und noch viel mehr. Kurz gesagt, im Gegensatz zu dir haben wir uns jeden Tag vor der Sonne zu fürchten und zu flüchten. Eine der angenehmsten Sachen der Welt, wie ein schöner sonniger Tag, wird für uns zu einem täglichen Alptraum, der uns seit Kindheit geprägt und uns vieles verwehrt hat, weil die Folgen von Lichtexposition unerträgliche Schmerzen und in extremen Fällen tatsächliche Verbrennungen sind. Es ist als ob jemand Feuer unter unsere Haut gesetzt hätte – Wir brennen von innen und die Angst vor diesen Schmerzen hat unser Leben gebrandmarkt. Es gibt ein Medikament, mit dem viele von uns behandelt werden konnten, das so genannte Afamelanotid. Es ermöglicht uns, in die Sonne zu gehen, die Kinder zur Schule zu bringen und mit ihnen im Park zu spielen, zur Arbeit zu gehen, diese auszuüben oder sie überhaupt erst zu lernen, an einem Sonntagnachmittag mit der Familie spazieren zu gehen und nicht alleine im Haus eingesperrt zu bleiben. Kurz gesagt, das Medikament hat uns ein normales Leben, eine Wiedergeburt gegeben. In der Schweiz waren wir die ersten, die es in 2006 getestet haben, und wir haben den Weg für seine Erprobung in vielen anderen Ländern geebnet. Die Zulassung fand in der Europäischen Union im Jahr 2014 statt. Bereits im Jahr 2012 konnten wir es durch Artikel 71a/b des KVV bekommen, die Kosten für die Behandlung wurden von den Krankenversicherungen übernommen. Seitdem konnten viele EPP-kranke Schweizer von der wundersamen Wirkung von Afamelanotid profitieren. Leider war diese Lösung nur vorübergehend ... seit ein paar Wochen haben viele von uns die schreckliche Nachricht erhalten, dass unsere Krankenkassen nicht mehr bereit sind, die Kosten für das Medikament zu tragen. Grund ist eine Preiserhöhung, die nach unserem Kenntnisstand notwendig war, um die hohen Anforderungen der Europäischen Behörden zu erfüllen und die formale Vermarktung des Medikaments zu ermöglichen. Wir wurden plötzlich wieder in die Angst vor dem Licht und seinen schmerzhaften Folgen zurückgeworfen. Zurück in die Hölle… Wir sind verzweifelt: die jungen Patienten unter uns befürchten, dass sie ihre Ausbildung werden unterbrechen müssen, es gibt Eltern, die sich nicht mehr um ihre Kinder werden normal kümmern können, Berufstätige, die jetzt ihre Funktionen nicht mehr wie früher werden wahrnehmen können, und einige von uns, die den Stellenverlust befürchten müssen, und noch andere die so hoffnungslos sind, dass wir uns grosse Sorgen machen, dass sie sich in den Alkohol stürzen oder sich gar das Leben nehmen werden. Die Lage ist dramatisch… Wir öffnen diese Petition, um eine klare Botschaft über die äusserst prekäre und verzweifelte Situation, in der wir uns befinden, an das Bundesamt für Gesundheit (BAG) zu senden: Wie kann es denn sein, dass uns der Zugang zu einem solch wesentlichen Medikament von einem Tag zum anderen verwehrt wird? Das ist eine Verletzung unserer Menschenrechte auf eine Behandlung! Es gibt keine Alternative zum Afamelanotid und die Einstellung der Vergütung stellt uns vor eine ethisch verwerfliche Entscheidung zwischen einer Behandlung und keiner Behandlung. Wir wurden bereits vom Schicksal schwer gezeichnet, an einer sehr seltenen und ungerechten Krankheit zu leiden, und jetzt sind wir auch durch ein Gesetz bestraft, das eine Entscheidung ermöglicht, die ausschliesslich auf wirtschaftlichen Aspekten beruht und auf völlig willkürliche Art und Weise bestimmt, dass wir dieser revolutionären Behandlung nicht mehr würdig sind. Wir flehen deshalb das BAG an, in unsere Situation konkret einzugreifen, und etwas tun, um uns Afamelanotid zurückzugeben. Wir beanspruchen das Recht, die gleichen sozialen, wirtschaftlichen und lebensverwirklichenden Chancen wie unsere anderen "normalen" Mitbürger zu haben, die nicht an einer seltenen und belastenden Krankheit wie EPP leiden. Wir bitten um Hilfe! FRANCAIS VIVRE SANS SOLEIL! Ainsi vivent les malades de Protoporphyrie Érythropoïétique. Aidez-les à accéder aux soins qui leurs permettent de sortir de l'ombre. Salut, as-tu déjà pensé à vivre sans le soleil ? La simple pensée semble impossible, n’est-ce pas? Mais je vais te révéler un petit secret…il ne s’agit pas d’un cauchemar duquel nous pouvons nous réveiller, mais de notre condition depuis notre enfance. Nous sommes un groupe de patients souffrant de Protoporphyrie Érythropoïétique (EPP), une maladie très rare qui nous interdit de vivre normalement car notre sang est malade, il brûle au soleil et il ronge notre peau de l'intérieur. Tout cela se passe après une exposition de moins de 5 minutes à la lumière du soleil, mais les sources de lumière artificielle sont également dangereuses pour nous. Tu as certainement immédiatement pensé aux vacances mais le problème pour nous n’est pas uniquement ça. Toutes les tâches simples du quotidien lors d’une journée ensoleillée sont un défi pour nous: ouvrir les volets de la maison pour laisser entrer la lumière, marcher au soleil pour aller déjeuner, prendre le bus pour aller au travail, conduire un véhicule, accompagner les enfants à l'école, se garer loin de l'endroit où vous souhaitez vous rendre, simplement travailler ou suivre votre formation dans des lieux inondés de lumière, et bien plus encore. En bref, contrairement à toi, nous devons fuir le soleil tous les jours. La chose la plus agréable au monde, telle qu’une belle journée ensoleillée devient pour nous un cauchemar quotidien qui nous a marqué depuis notre enfance.  Nous devons renoncer à beaucoup de choses car les conséquences d’une exposition à la lumière peuvent mener à une douleur atroce et, dans d’extrêmes cas, à des véritables brûlures. Tu brûles réellement de l'intérieur comme si tu étais prisonnier d’un incendie et la peur de cette douleur affecte nos vies. Un médicament que beaucoup d'entre nous ont pu essayer, appelé Afamelanotide, nous permet de nous exposer au soleil, aller chercher les enfants à l'école et de jouer avec eux au parc, travailler et suivre une formation, de sortir le dimanche après-midi en famille et enfin ne plus rester enfermé seul à la maison. En bref, le médicament nous a donné une vie normale, il nous a fait renaître. En Suisse, nous avons été les premiers à le tester en 2006 et nous avons ouvert la voie à son expérimentation dans de nombreux autres pays et à son approbation dans l'Union Européenne en 2014. En 2012, nous avons pu l’obtenir grâce à l'article 71a/b de la OAMal et les assurances maladie ont pu couvrir les coûts. Depuis lors, de nombreux malades Suisses ont pu bénéficier des effets miraculeux  de l'Afamelanotide. Malheureusement, cette solution ne fut que temporaire...depuis quelques semaines beaucoup d'entre nous ont reçu la terrible nouvelle que nos caisses maladies ne sont plus disposées à rembourser le coût du médicament en raison d'une augmentation du prix, à notre connaissance nécessaire pour répondre aux exigences rigoureuses des autorités européennes et pour permettre la commercialisation officielle du médicament. Nous nous retrouvons à nouveau plongés dans la peur de la lumière et de ses conséquences douloureuses. Retour à l’enfer… Nous sommes désespérés: les jeunes patients parmi nous craignent de devoir interrompre leur formation professionnelle, il y a des parents qui ne seront plus capables de s’occuper de leurs enfants normalement, des employés ou des indépendants qui ne pourront plus exercer leurs fonctions professionnelles comme avant, et certains parmi nous qui ont peur de perdre leur emplois, et d'autres encore qui sont si désespérés que nous craignons sérieusement qu'ils puissent se plonger dans l'alcool ou même se suicider. La situation est dramatique... Nous ouvrons donc cette pétition pour donner un message clair à l'Office Fédéral de la Santé Publique (OFSP), quant à la situation extrêmement précaire et désespérée dans laquelle nous nous trouvons. Comment se fait-il que l’accès à un remède si essentiel puisse être retiré du jour au lendemain? Ceci est une violation des droits de l'homme et de notre droit à un traitement! Il n'existe aucune alternative à l’Afamelanotide et avec cet arrêt du remboursement du médicament nous sommes confrontés à un retour forcé à notre vie de malade, à une décision éthiquement répréhensible entre un traitement et pas de traitement. Nous avons déjà été sévèrement marqués par le fait d'avoir une maladie très rare et injuste, et maintenant nous sommes également pénalisés par une loi qui permet une décision arbitraire, fondée uniquement sur des aspects économiques. Celle-ci a déterminé que nous ne sommes plus dignes de ce traitement révolutionnaire. Nous implorons l'OFSP d'intervenir concrètement dans notre situation et d’agir pour nous redonner l’accès à l’Afamelanotide. Nous revendiquons le droit d'avoir les mêmes opportunités sociales et économiques, de pouvoir vivre comme le font nos autres concitoyens "normaux" qui ne souffrent pas d'une maladie rare et handicapante comme la EPP. S'il vous plaît aidez-nous! ITALIANO VIVERE SENZA SOLE!  Così vivono i malati di Protoporfiria Eritropoietica. Aiutateli ad avere la cura che gli permette di uscire dall’ombra. Ciao, hai mai pensato di vivere senza sole? Impossibile solo il pensiero, vero? Ma ora ti svelerò un segreto a te che stai leggendo... ciò esiste e non è un incubo dal quale ci si può risvegliare, ma la nostra condizione dall'infanzia. Siamo un gruppo di pazienti affetti da Protoporfiria Eritropoietica (EPP), una patologia molto rara che non ci permette di vivere normalmente perché il nostro sangue è ammalato e brucia al sole, corrodendo la pelle dall'interno. Tutto ciò accade in meno di 5 minuti d'esposizione al sole ma anche a fonti di luce artificiale, e se anche hai pensato subito alle vacanze, il problema non è questo per noi. Essenzialmente è tutto ciò che tu fai in una giornata di sole. Aprire le ante di casa per far entrare luce, camminare al sole per andare a fare colazione, guidare la macchina o prendere il bus per andare al lavoro o portare i bambini a scuola, parcheggiare dove vuoi anche lontano dal luogo dove ti devi recare, lavorare in luoghi inondati di luce, svolgere il tuo lavoro o la tua formazione professionale in tali ambienti, e molto di più ancora. Insomma, noi a differenza tua dobbiamo scappare dal sole ogni giorno e la cosa più piacevole al mondo come una bella giornata di sole per noi diventa un incubo quotidiano che ci ha segnato dall'infanzia e ci ha fatto rinunciare a moltissime cose perché le conseguenze dell’esposizione alla luce sono dei dolori strazianti e in casi estremi ustioni vere e proprie, come se qualcuno avesse appiccato il fuoco sotto la tua pelle – Tu bruci dall’interno e la paura di questi dolori ci ha condizionato la vita. Esiste un farmaco che molti di noi hanno potuto provare, si chiama Afamelanotide e ci permette di camminare al sole, andare a prendere i bambini a scuola e giocare con loro al parco, andare al lavoro, svolgerlo e impararlo, uscire la domenica pomeriggio in famiglia e non stare chiusi in casa da soli, insomma il farmaco ci ha donato una vita normale, ci ha fatto rinascere. In Svizzera siamo stati i primi a sperimentarlo nel 2006 e abbiamo aperto la via alla sua sperimentazione in molti altri paesi e alla sua approvazione nell’Unione Europea nel 2014. Già nel 2012 siamo riusciti a ottenerlo grazie all’Articolo 71a/b della OAMal e alla copertura dei costi da parte delle assicurazioni malattia. Da allora molti malati Svizzeri hanno così potuto beneficiare degli effetti miracolosi dell’Afamelanotide. Purtroppo questa soluzione si è rivelata solo temporanea…da alcune settimane molti di noi hanno ricevuto la terribile notizia che le nostre casse malati non sono più disposte ad assumersi i costi del farmaco a causa di un aumento di prezzo, da ciò che abbiamo potuto capire necessario per soddisfare le severe richieste delle autorità Europee e permettere la commercializzazione formale del farmaco. Noi ora ci troviamo ripiombati nel terrore della luce e delle sue dolorose conseguenze. Ritorno all’inferno… Siamo disperati: giovani malati che temono di dover interrompere la loro formazione professionale, genitori che non saranno più in grado di prendersi cura dei loro figli in modo appropriato, dipendenti o liberi professionisti che non potranno più svolgere i loro compiti lavorativi come prima, e alcuni di noi che hanno paura di perdere il posto di lavoro, e altri ancora che sono così angosciati che abbiamo seriamente paura che possano affogare la loro disperazione nell’alcool o addirittura togliersi la vita. La situazione è drammatica... Apriamo questa petizione per far arrivare un messaggio chiaro all'Ufficio federale della sanità pubblica (UFSP) sulla situazione estremamente precaria e disperata in cui ci troviamo: come può essere che una cura così essenziale ci possa essere tolta da un giorno all’altro? Ciò è una violazione dei nostri diritti umani a una cura! Non c’è alternativa all’Afamelanotide e l’interruzione del rimborso del farmaco ci pone di fronte a una decisione eticamente deprecabile tra una cura e nessuna cura. Già siamo stati duramente segnati dal destino di avere una malattia molto rara e ingiusta, ed ora ci troviamo anche penalizzati da una legislazione che permette una decisione basata unicamente su aspetti economici che in maniera completamente arbitraria dichiara che non siamo più degni di questa cura rivoluzionaria. Imploriamo l’UFSP di intervenire concretamente nella nostra situazione e fare qualcosa per ridarci l’Afamelanotide. Rivendichiamo il diritto di avere le stesse opportunità sociali, economiche e di realizzazione di vita come i nostri altri concittadini “normali” che non soffrono di una malattia rara e debilitante come l’EPP. Per favore, aiutateci! ENGLISH LIVING WITHOUT SUN! This is how Erythropoietic Protoporphyria sufferers have to live. Help them have the treatment that allows them to emerge from the shadows. Hello, have you ever thought of living without the sun? You can’t even imagine that, can you? But now I will reveal a secret to you who are reading this...this is not a nightmare from which we can awaken, but our condition since childhood. We are a group of patients with Erythropoietic Protoporphyria (EPP), a rare disease that does not allow us to live normally because our blood is poisoned and burns in the sun, eating away at the skin from within. All of this happens in less than 5-minute exposure to sunlight, but also artificial light sources are dangerous, and even if you are now thinking “holidays, how does that work?” this is not the key problem for us. Essentially, everyday life is a constant battle against the sun: Opening the window drapery of the house to let the sunlight in, walking in the sun to go to breakfast, driving or taking the bus to go to work or take the kids to school, parking your car wherever you want even if it is far from the place where you intend to go, working in places flooded by light, carrying out your work or your professional training and education in such environments, and much more. In short, unlike you we have to protect ourselves from the sun every day. One of the most pleasant things in the world such as a beautiful sunny day for us is a painful nightmare that has marked us since childhood and made us give up many things because the consequences of light exposure are excruciating pain and, in extreme cases, actual burns, as if someone had set fire under your skin – You are burning from the inside out and the fear of this pain has dramatically affected our lives. There is a drug that many of us have been able to try, called Afamelanotide, and it allows us to walk in the sun, get the kids to school and play with them in the park, go to work, carry it out and learn a job, go out on a Sunday afternoon with the family and not stay locked in the house alone. In short, the drug has given us a normal life, it gave us a rebirth. In Switzerland, we were the first to test it in 2006 and we have paved the way for additional clinical trials in many other countries and its approval in the European Union in 2014. Already in 2012 we were able to get it through Article 71a/b of the Federal ordinance on health insurances, and treatment costs were covered by health insurances. Since then many Swiss EPP-sufferers have been able to benefit from the miraculous effects of Afamelanotide. Unfortunately, this solution was only temporary...a few weeks ago many of us received the horrible news that our health insurance companies are no longer willing to reimburse the costs of the treatment due to a price increase necessary, to our knowledge, to meet the stringent demands of the European authorities and allow the formal marketing of the drug. We now find ourselves plunged back in fear of the light and its painful consequences. Back in hell… We are desperate: young patients fearing to have to interrupt their professional training and education, parents who will no longer be able to care for their children appropriately, employees and professionals who will not be able to perform their work duties as before, and some of us who are afraid of losing their jobs, and others who are so hopeless that we seriously fear that they might drown their desperation in alcohol or even commit suicide. The situation is dramatic ... We are opening this petition to convey a clear message to the Federal Office of Public Health (FOPH) on the extremely precarious and desperate situation in which we find ourselves: how can it be that the ONLY treatment which is so essential for us EPP sufferers can be withheld from us from one day to the next? This is a violation of our human rights to a treatment! There is no alternative to Afamelanotide and with the discontinuation of the reimbursement we are now faced with the ethically reprehensible decision between a treatment and no treatment. We have already been severely marked by destiny with a very rare disease, and now we are also penalized by a law that allows a decision based solely on economic considerations, which in completely arbitrary fashion determines that we are no longer worthy of this revolutionary treatment. We implore the FOPH to take concrete steps in our situation and do something to give Afamelanotide back to us. We reclaim the right to have the same social and economic opportunities as well as the right to realize our life plans just like our other "normal" fellow citizens who do not suffer from a rare and debilitating disease such as the EPP. Please help!  

Swiss Society for Porphyria - www.porphyria.ch
5,197 supporters
Update posted 2 months ago

Petition to Susan Martin, Bob Steinburg, Beverly Boswell, Howard Hunter, Shelly Willingham, Michael Wray, Michael Speciale, Gregory Murphy, George Graham, John Bell, Pat McElraft, Jean Farmer-Butterfield, Jimmy Dixon, Larry Bell, William Brisson, John Szoka, Charles Graham, Ken Goodman, Garland Pierce, James Boles, John Sauls, Robert Reives, Verla Insko, MaryAnn Black, Larry Yarborough, Bert Jones, Jon Hardister, Pricey Harrison, John Faircloth, Kyle Hall, Debra Conrad, Sam Watford, Allen McNeill, Justin Burr, Mark Brody, Rodney Moore, John Bradford, Sarah Stevens, Lee Zachary, Rena Turner, Dean Arp, Mary Belk, Linda Johnson, Harry Warren, Julia Howard, Jeffrey Elmore, Dana Bumgardner, Kelly Hastings, Jason Saine, Mitchell Setzer, Chaz Beasley, Tim Moore, David Rogers, Hugh Blackwell, Destin Hall, Jonathan Jordan, Josh Dobson, John Ager, Chuck McGrady, Cody Henson, Brian Turner, Michele Presnell, Mike Clampitt, Kevin Corbin, Jay Adams, John Fraley, Scott Stone, Andy Dulin, Shirley Randleman, Ronald Rabin, DON DAVIS, Jeff Tarte, Carla Cunningham, Kelly Alexander, John Torbett, William Brawley, Becky Carney, Susan Fisher, Beverly Earle, John Autry, Larry Pittman, Larry Potts

Newborn Screening for Krabbe disease in North Carolina

   Our son, Thomas, was born on September 21, 2015. In February 2016, 5 months later, Thomas was diagnosed with a fatal disease known as Krabbe disease. On Wednesday July 12, 2017, our son Thomas passed away due to the progression of this disease. Our hearts are broken. At first, Thomas seemed to be a "normal" baby, smiling, looking at us, flaring his hands and feet around, you know, what a normal baby does. As time went on, we knew Thomas was not a "normal" baby. He would cry inconsolably. We were told that Thomas was "colicky" and it would eventually pass. Well...It didn't pass. Thinking Thomas had reflux, he was put on Similac Alimentum. His crying persisted. Thomas was not meeting his milestones: holding his head up, rolling over and holding himself up. He also quit eating and was losing weight. We took him to the pediatrician and he was admitted into the hospital. During this weeklong hospital stay, Thomas was put through so much for a 3 month old. It was hard to see my little son getting a NG tube shoved down his nose so he could eat, IV placed in his little hand, blood being taken from his little arm and nurses and doctors constantly waking him up to examine him. About 2 weeks after going home from the hospital, we received a call from his pediatrician. Thomas' blood results were back, he was officially diagnosed with Early Infantile Krabbe Disease. We were told this over the phone....yes...over the phone. This news was devastating. Thomas was back in the hospital to replace his NG tube with an G tube placed in his stomach. The reality that our little Thomas was never going to be an active little boy set in. During Thomas' short life, we watched our courageous son slowly lose his ability to laugh, to smile, to breath on his own, to swallow, to control his eye movement, and to move his head arms and legs. Thomas was on 11 different medications at the time of his death, 4 of which were narcotics to control his breathing and seizures. Krabbe is a rare, fatal genetic disorder that affects the central and peripheral nervous systems. Children affected by Krabbe suffer greatly and typically do not live beyond their second birthday. My heart breaks for our son, Thomas, and for children who are born here in North Carolina and not given a fair chance at a healthy life. Sadly, I know of at least 4 families (5 including Thomas) that have watched their children slowly die , very recently, due to this disease, right here in North Carolina. When Thomas was diagnosed with this disease, we were devastated to learn our son would not be with us for long. What makes this news even worse is to find out that Thomas could have been tested, and treated, for this disease at birth and wasn't. Here, in North Carolina, Krabbe is NOT on the newborn screening list. WHY? Why does North Carolina not screen for this disease when one of the leading physicians on Krabbe is right here in North Carolina, Dr. Joan Kurtzberg at Duke University? For years, thousands of children have died and thousands more have become permanently disabled because they were not screened for all possible diseases at birth. You can prevent other children from needlessly suffering by sponsoring an amendment to the current newborn screening laws for North Carolina. Like many other diseases, Krabbe Leukodystrophy is only treatable if diagnosed before the child is symptomatic. Cord blood transplantation has proven for many to be a lifesaving treatment that can give children with Krabbe the potential for a healthy life. I am asking you to advocate for expanded newborn screening in North Carolina and that you sponsor legislation to add Krabbe and five similar disorders to its newborn screening panel. These Lysosomal Storage Disorders can be cost effectively screened together and must be diagnosed early to save children's lives! I appreciate your consideration on this life altering issue and look forward to our future correspondence.  

David Jessee
40,934 supporters
Update posted 7 months ago

Petition to Francis Collins, Tom Price

Increase Funding For ME/CFS So We Can Find a Cure

I am only 31, and yet, simple tasks like taking a bath completely exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic disease that causes disabling symptoms like chronic pain, cognitive impairment, exertional intolerance, severe weakness and crippling fatigue. Many days I am too weak to do anything but walk to the bathroom and back to my bed. Before I became sick, I was able to attend LSU, study abroad, enjoy SEC football and earn a degree in Journalism. Now, just a trip to the grocery store can land me in bed for days. I've lost my independence and take 25 pills a day just to manage the pain and symptoms of the illness. I have lost my life as I knew it. Health Agencies have dismissed this disease for decades and failed to take the health of millions of sick people seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the direct result of a major lack in funding for biomedical research. In the 2016 federal budget, the NIH allocated $6 million toward studying ME/CFS. More than double that amount was spent on male-pattern baldness. Meanwhile we are suffering, some of us bed bound, with little hope and our futures up in the air. We can do better. Please stand with me and the millions suffering with this life-sucking disease in demanding that Francis Collins keep his promise and that the NIH drastically increase their allocated funding for ME/CFS research. The burden of this disease is huge, on families and the economy. It costs our country billions every year in lost productivity because more than half of us are too sick to work. Families savings are drained as most insurance fails to cover the high cost of longterm management.  There are so many others like me; once living productive lives with families and promising careers. Now we're stuck with an orphaned disease and our pre-sick lives are just a memory. Some patients are so severely ill, they are confined to dark rooms, unable to tolerate sound, talking, or light. They cannot walk and some are unable to eat. They aren't "living" they are just hanging on. And it doesn't have to be this way. I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure. With your signature, we can hold the NIH and congress accountable for taking our disease seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding. We can also restore hope to millions world-wide that they may live again, including me and my dog Monty. Thank you.    #WeCanDoBetter Let's do it now. Read about my weird sick life at 25pillsaday.com  Visit millionsmissing.org for more information about upcoming protests.  

Mary Gelpi
42,816 supporters