My beautiful 16 year old daughter, Faith, was diagnosed in September 2012 with Idiopathic Gastroparesis. We had never heard of this disease before, and to put it bluntly, while I was relieved that the doctors had finally could explain why my daughter had been so ill for several long months, I was also petrified as to what this diagnosis meant for my daughter. I came across the G-PACT website when I was doing research on my daughter's condition while waiting the two weeks it took between getting the diagnosis and actually getting an appointment to see her pediatric GI specialist. Many of the sites I found provided generic information about Gastroparesis, but the G-PACT site is different. As I looked at the information on this site, I knew I had found an organization that cared about my daughter and other people suffering from severe chronic digestive illnesses. Not only is G-PACT actively working to raise funds for research into diseases like Gastroparesis, it also provides support groups for and pertinent information about these disease to people who suffer from them. My daughter has been able to connect with other young people who also have Gastroparesis which has been a blessing because it has helped her realize that she is not alone. It is wonderful for her to be able to share her experiences with others who understand what she is going through. I have learned more about how to meet the needs of my daughter through the information provided by G-PACT than I have through any other source, including her doctor. We live in a state where we have no medical professionals who are specialized in treating Gastroparesis, so this information has been a life saver. I have just signed up to be a volunteer for G-PACT because I truly believe in and appreciate the work they do.
I was connected to resources so fast it puts doctor referrals to shame! Definitely felt like they care for each person and their needs.
When I got sick I had never felt so alone. Thanks to G-PACT I realized there were others out there like me!
Great group of people who work voluntarily to do so much for Gastroparesis and other similar conditions. If I hadn’t found them, I wouldn’t be alive. My doctors and family don’t understand. I have found others who do through G-PACT and have even been able to meet some people in person! I don’t feel so alone anymore.
It’s been an honor to volunteer with G-PACT. It’s a great group of people dedicated to advocacy and awareness, truly working hard to help everyone in need!
I am Jodi, from Delaware. I was diagnosed with Gastroporesis this April (2017) after one year of pain and suffering. Prior to this diagnosis, early last year, I was diagnosed with Gastritis. I also suffer from IBS-C (for about 2 years), but most of my life had IBS-D. I also have GERD, Barrett's Esophagus, Hiatal Hernia, phew. So my GI tract has been acting up for some time now. IBS-C causes serious along with the Gastroporesis.
I suffer daily from Gastroporesis, can barely eat 2 meals/day, and drink Glucerna as a supplement. I spend most of the day on the sofa, with a heating pad to cover my abdominal area. If you haven't tried one, the heating pad helps ease the pain. Unfortunately, I have Tardive Dyskinesia, which is the most serious side effect of the Gastroporesis medication, so unable to take it.
I have read about Gastroporesis, but am interested in learning how other folks manage their disease. I would like to speak to others about the ins and outs of daily life.
Last week, I had Botox injected in the Pylori area (where stomach ends, before dumping into intestines. So if you have questons, please ask.
God bless you all.
I'm 31 April Leone diagnosed this year with extreme case of Gasteroperises I go through 2 weeks of nausea a month nothing works on reglan don know how to live the rest of my life like this have no experience and need help group or support please 7276003804
This organization has been a great help to my wife. It has given her a lot of resources to refer to and provided a lot of support.
It wasn't until I dug below the surface that I learned what G-PACT really does. They are not only a thousands-strong patient support community. They are more than helpers who print cards for patients. They are also investigators who find the people in media and government who are fighting the same fight, and they collaborate with them.
Maintaining a social media presence is one thing, but having physical meetings with legislators to make the needs of the digestive tract paralysis community known, that is something rare and potentially game-changing.
Staffed by volunteers, almost all of whom suffer from the diseases the Org supports, there is copious compassion, empowerment, and educational opportunities.
G-PACT is pushing a very big boulder up a very big hill tirelessly. Help them however you can. I chose to dedicate my time and experience to the volunteer board of directors. There is room to help, and a strong sense of what that help actualizes into.
This organization has given me so much information and hope. I have a 5 year old that has suffered for a few years, and I have learned more here than with any doctor.
Gpact has given this momma and her teen daughter a better understanding of what was to be expected so much more then her drs prepared us for ..we are still new to the gastroparesis world ..but with Gpact in my pocket of resources I'm not as worried or over whelmed with dealing with this disorder .. now if only we can get the world to understand we would be golden .. anyone who ever hasld questions that I couldn't answer I send them to this group.. school nurse and teachers as well as family members are all one the same page ..I couldn't ask for better support we love Gpact ♡♡
Great group of volunteers and they really care about us patients! They have done so much for the gastroparesis community over the years.
G-PACT is always available to help patients understand their illness. Plus, the do a great job of increasing awareness. They advocate for us all daily and many of us would be lost without them.
g-pact is an amazing organization and an indispensable resource for info about treatment options and the latest research.
So much useful information. This site has been a God send through this entire nightmare. I love the pamphlets I received as well. Big thank you to everyone involved!
Awesome organization. This is an organization which is fully staffed by volunteers so every single penny goes directly back to patients in some way. They are leading the fight against Gastroparesis, chronic intestinal pseudo-obstruction, and colonic inertia. They are doing the first and only international IRB approved research study into GP. The volunteers are available 7 days a week and genuinely care and understand my needs because they all have it themselves. They know exactly what patients need and work to gear all programs to meet those needs. The volunteers are very personable and take time with ME, even though they have their own serious health issues. They have so many totally free resources, provide a wealth of the latest info, founded DTP awareness month, and have a huge international presence. They just get me. They understand from a first-hand perspective, not just head knowledge and facts. They know with heart and they show it. They are very responsive to me and do as much as they can to ensure I get as much support and info as possible. Their integrity is so high and they are open and honest about everything. They work as hard, or harder, than people who get paid. It's a passion for them...not a job. I've been a fan since almost the beginning, and they have grown so much! I fully trust them with my privacy and their expertise in this area!
I have volunteered for this organization and was disappointed of the misappropriation of money being used. Good for information, but I would never ever donate my hard earned money to them.
This comment was made by a disgruntled volunteer who was let go in 2013 after only three months. She never had access to any financial or operational information. G–PACT is a GuideStar Gold participant, which means we are committed to transparency and annually update our financial records through GuideStar. You can view our records on GuideStar or email us at firstname.lastname@example.org with any specific questions.
This organization has helped so many, including myself. They have taught me so much about Gastroparesis. I thank God for them.
This fabulous group has unselfishly helped so many; from information and support for those with the condition (s) to raising awareness so even more can be helped.
G-PACT provided more information about my disease than any of my doctors have. I learned about medical options, joined their support forums, and learned tips for caring for my feeding tubes, traveling with medical equipment, and navigating life with a serious and chronic illness.
I have been helped by these people for seven years and have helped as a volunteer for a couple years.
Incredible foundation that raises awareness for those who cannot seek the attention they deserve. These are terrible disease which need cures today! No child or adult should starve to find a cure! Thank you G-Pact for raising awareness!
G-Pact is a great organization for patients. I have full Digestive Tract Paralysis. As I have gone through varying stages of this disease (diagnosed in 2004...sick since 2000), G-Pact has been there with dietary recommendations, research, resources to become familiar with medical terminology, information about clinical trials and medications, and much more. They are also there when you just need someone to listen or a little pep talk. Thanks G-Pact!!!
This is an awesome organization. I was diagosed in 2002 and everyone has been so incredibly helpful; from support and adivice to petitioning my insurance company to cover a surgery for me. Everyone is wonderful!!
Great organization that has helped my wife so much. She can get answers to her questions almost anytime during the day and night. They really work hard to help others.
Great group of people who work hard every day to help others. I am proud to be affiliated with this organization.
very helpful organization. they are helping us gastroparesis patients
This organization has helped me learn about my disease and has given me resources that I have found nowhere else.
I was diagnosed with Gastroparesis in 2010. As there is little to no help locally, I felt completely alone and isolated from everyone around me. Absolutely no one in the medical field where I live had been able to offer advise as to how to live with this most debilitating condition. I spent three years in the dark, feeling more and more helpless and alone.
Thank God I stumbled upon G-Pact support group! They have been a tremendous source of help and support to me. I truly thought I was going crazy until I found others going through the same thing! G-pact was the first to give me valuable information on diet, suggestions on pain relief and so helpful in emotional support as well.
They have my undying appreciation!
I have been sick since Nov. Of 2010. I first found about G-pact by watching you tube. Carissa, the founder of G-pact had made for college. Not only did I learn a lot I was able to see and hear my motility doctor do an interview for Carissa and G-pact. Dr.Kenneth Koch is one of the most sought after motility doctors in the world. Just the fact he did this very happy important video for Carissa and G-pact shows who he is very aware that the is so little education and support for our community. Even before Facebook came about G-pact was reaching those in desperate need of education and support. I remember coming home from my doctors appointment and got the diagnosis of gastroparesis. My doctor then just put me on Reglan and told me to eat 6 small meals a day. But once I looked it up on the internet I learned the sad and scary truth. I was new to all this and G-pact was the first place I found online that did not scare me to death but helped explain my new illness, the best tests, a list if doctors, a support group that was managed by others like myself who suffered and I understood. And now with this great PSA video, the message can reach even more, if only we could get more funding and support. Gastroparesis can be a very isolating illness. Food is the center of every family get together, every holiday, any celebration....food is a major part of the fun. But once food is removed from your life you just can really feel the magnitude if that isolation. The looks you get at a restaurant when everyone else orders food and you can't cause you will get sick and be doubled over in pain. You even stop receiving your invitations. G-pact is a tight bunch. We send out cards and gifts to one another. Even when we are so sick and even when our volunteers who direct these outreach are very I'll, the outreach of love and support touches every need possible. G-pact reaches out to families who have lost a loved one to some form of digestive tract paralysis. They have a phone line that is a toll free number that gives us a chance to actually hear a kind voice on the other end of the line. Online support groups are so important to those like myself that will be on bed rest for awhile or in the hospital fighting for our lives. G-pact has saved lives many times over. They don't spend money on having these huge fund raisers to keep them up and running, unlike many non profits. They keep it fun and despite those volunteers being ill
themselves, tireless hours are donated with no complaint. All to spread the word so more research will be funded, so people will not feel alone and even is used to educate those in the medical field.
Anyway we can promote G-pact and save a life is priceless. Help us to spread the word by adding G-pact to your important list. Once you learn more about digestive tract paralysis and how it affects newborns and seniors. It is a very painful slow starvation. Help us spread the word and educate those who suffer like myself and desperately educate the medical field that gas not always been very kind and to us. People either reach out a hand for help or will run away from what they do not understand.
I was diagnosed with gastroparesis about 3 years ago after being sick and I diagnosed for over a year. G-Pact had a wealth of information for me with my new diagnosis. The support system and information they provide through their website and online groups has been amazing. I have learned so much from them. Thank you G-Pact for the resources, support and encouragement you provide.
I was diagnosed with Gastroparesis nearly 2 years ago after 5 years of severe illness. This is a disease that can make you feel very alone because it is rare, and there isn't a lot of awareness out there for it. My sister did some research online and found G-PACT for me. They've been a lifesaver! There's so much good information available through this group for people suffering from this disease, and they're constantly working to raise awareness for it, as well as working to encourage the medical community to find more effective treatments. I'm involved with the support group online, and it's been so good for me. There are so many compassionate people there who are willing to share information about the disease. It's gone a long way toward helping me feel less isolated. I've made friends through G-PACT's support group who will be my friends for life!
I was diagnosed with Gastroparesis about 2.5 years ago after about 1.5 years of symptoms. I had seen a GI Dr several times and my pcp ordered a gastric emptying test as one last attempt to figure out why I was sick all of the time. The results showed delayed emptying. The results of this test have led me down a long, rough road of trying to manage my symptoms day to day (nausea, difficulty going to the bathroom, fatigue..) and making constant adjustments as I learn more about what my body needs. The cause for my Gastroparesis is currently idiopathic (unknown).
I found G-PACT right after my diagnosis and received materials in the mail that gave helpful information about Gastroparesis. My frustrations for lack of knowledge and medical options by the medical field has made me want to volunteer and try to help others who are struggling and those who are newly diagnosed. I can only hope that one day medical professional will have the resources to treat Gastroparesis and hopefully one day there will be a cure! The volunteers are great and all struggle with health issues themselves, but all share the common goal of advocacy and working towards a cure. G-PACT has a lot of wonderful support groups where people can support and encourage one another, and many other programs to support people with digestive tract paralysis, as well as grief programs for those that lost their lives.
When I was first diagnosed in 99 I thought I was alone, I went into remission until 2004. I found G-PACT shortly after being diagnosed. They provided info so that I was able to find a dr who could help me since my local GI's were out of options. With all the support they provided I was able to work with them and became a board member around 2011. I help admin several Facebook groups & a yahoo support group. I have also participated in DDNC since 2011 to fight for better treatment for this disease.
when I first was diagnosed with gastroparesis, I had no one to turn to for support and help understanding my Condition. i googled gastroparesis and found GPACT. i met many who i could identify with. I found and made friends with many people with the same condition who were able to help me during the beginning. support is critical and GPACT provides support, education, and encouragement along with networking resources. I would be lost with out it. Now I'm a volunteer assisting others in creating hands on support groups across the USA. this group needs to continue to be in active status there is still so much we have to do. Thank You GPACT for making a difference in my life..
I suffer daily with gastroparesis and if it weren't for G-Pact I don't know how I would get through. A great organization.
G-PACT is currently small but growing. Which is good considering it's the only voice for all of us who suffer from debillitating gastroparesis and need support and advocacy more than ever. Gastroparesis is a very serious disease that demands awareness and research, sadly we do not get it. Luckily G-PACT exists for those of us suffering.
G-PACT I have Gastroparesis and this non- profit org has given me so much to see and learn how to have hope for my survival to a dreadful disability education, links,clinical trials support groups, participation to helping others! Thats life oppurtunity that I was so in need to live, Awareness to a condition like no other! Respectful to those lost ! Family comaderity! Kind to all .,. Thank you G-Pact
I came to know G-PACT through a YouTube video I saw. I had recently been diagnosed with Gastroparesis at that time. As for most people with GP, I began exploring social media to find others who also suffer from GP. I saw all the wonderful things G-PACT did for everyone suffering from Digestive tract paralysis. G-PACT is ran by all passionate volunteers who spread the word and help others with Gastroparesis. G-PACT has given me and so many others a voice and a place to go for help and support for such a rare disease.
G-PACT has changed not only my life but the life of many people. Being isolated with a "rare" condition that more than 5 million Americans suffer, no doctor could ever give better information that the one provided by G-PACT. A part from amazing guidelines and resources they provide a social network between those who we suffer this daily chronic pain and malnutrition. Please consider G-PACT as one of the best of the best.
I love being able to have somewhere to go to look for information about the rare disease that I have. G-PACT is helping by getting information out and by getting those of us with digestive diseases to work together to have the government acknowledge these diseases and help find a cure!
I came to G-Pact through a friend about two years ago and joined the group. I was welcomed and made to feel like a part of this online family. I received information, support and compassion that I so desperately needed at that time and then no longer felt alone. I have made some amazing friends through G-Pact and I'm sure some will be lifelong friends. Being a part of something bigger when cHronic illness can make you feel so small and alone is just priceless. I am thankful.
my mom has gastroparesis and i am boarderline. this page helps me to keep up with the news and events regarding this horrible disorder. it also helps to know that we are not in this alone. thank you to the volunteers that post information and fight for us.
I have been diagnosed with gastropareis since 2007. My freshmen year of college. when i kept throwing up and the diarehia i didnt know what was happening to me. I ended up going to the hospital the Dr. there thought I was anerexic. I tried to explain to him i cant keep my food down. They just gave a prev pav to take 14 days. I was scared and went from 148 pounds to 98 pounds in a month or two. I really thought I was going to die. But someone preferred me to a GI Dr. they gave me the test where u eat the scramble eggs and have to lay down for two hours so they can watch how long it takes to digest your food. Right of the bat after taking the test getting the results he knew it was gastroparesis. i was happy that they found out what it was. i would think to myself i will be able to live and eat and get strong again. at the same time my boyfriend and i were starting to date. needless to say even though i threw up my food on our first valentines day and many other days. he was always there beside me giving me support and comfort. We just made it to our six year anniversary this year on Oct. 31 2012.If it wasnt for him i would have gone crazy. My eating improved after i took reglan for a week before i had blurry vision side effect, so they had to take me off of it. and on motillium. for five and half years i was doing good till Sept. 11, 2012 I started to have severe stomach pain.mit was Gastroparesis acting up i went back to my same dr. again and now im on the gastroparesis diet it has helped a lot. the pain eased up. i have a follow up appointment Nov 20 th. the only things i fear are: hoe long will this diet help me, will i get it even more severe than what it is now, not knowing if i have to get surgery or not, feeding tubes, stomach pacer, im not sure but i have asked my boyfriend is still gonna stay with me even though i have a chronic illness, he said, "yes i will be with you like i did at the biggening when it first started to the end..." so i hope i have a long life and that one day there will be better ways of treating this illness. this organization helped me in dealing with the sadness i had when i found out that this illness doesnt go away, made me laugh, suggestions on how other people who have the same thing i have deal with their own troubles of eating, change of diet, dresssing for comfort, and better ways of dealing with the symptoms of gastroparesis. I would like to thank them in helping me understand and deal with this chronic illness.
I have idiopathic gastroparesis. GPACT gives people like me a voice. They work so hard to advocate for people with this condition. I am always excited to see what project they are doing next. And they inspire me to get involved. GPACT is working hard to spread awareness of this condition so that we can have better treatment options and one day a cure.
I learned so much from the g-pact you tube videos produced by the founder Carrisa. When I learned about gastroparesis there was no facebook. But thanks to g-pact and Carrisa I was able to educate myself and even my family dr. And without the facebook g-pact group I would be so lost as to what to do and how to get treated. G-pact is an awesome group of volunteers that are often very sick themselves yet continue to put out a great support group for us and our dr.'s to follow.
I have never met a doctor that knows very much if any about this disease. After I was diagnosed with gastroparesis I was led to G-pact. They have been so informative for me. Many days I don't know what I would have done without them. I have suffered nearly 30 years with this disease and through G-pact I received more information than I knew what to do with. Thank you G-pact,
I have worked for a non-profit for going on 5 years and have worked for two non-profits prior to that. My passion is making a difference in the community. I have never seen a non-profit work as hard as G-pact though. I have Gastroparesis and it truly is a scary disease. Gastropareisis is lacking research from science, doctors and approval of any medications from the FDA. Without the work of G-pact patients like me would be completely alone in our fight to survive this horrible disease. G-pact thank you for all the hard work you do each day.
As a family member of a person with GP, having an organization available to provide valuable information and support is much needed. G-PACT provides what is needed in an easy to understand manner.
It took over 20 years of searching to find out what was wrong with me... years of being told it was all in my head because of the lack of Awareness of Gastroparesis not only with the general public but also in the Medical field. It was a year after I was diagnosed that I was directed to G-PACT on FaceBook and spoke with the founder of this wonderful organization. I discovered that every single person that works for this nonprofit are unpaid volunteers, the vast majority of them sufferers themselves who struggle through their own battles daily to try to help raise awareness. It should not take over 20 years for someone to get a diagnoses of a condition that is estimated to affect between 5 and 13 million Americans alone and G-PACT is working tirelessly to change that.
Prior to finding G-PACT, the only person I knew with Gastroparesis was my grandma. For over 20 years, it was just my grandma and I facing a random faceless disease. We didn't even know the diseases name. Once I received the formal diagnosis of Gastroparesis, I went on-line where I found G-PACT. I found a support group "G-PACT Middlers" where for the first time I was able to interact with others about GP. Words cannot express what it felt like to no longer feel stranded on an island. Through G-PACT, I have learned how to handle various symptoms, how to educate others, and how to laugh in spite of it all. I really don't know how I was surviving without all of my GP brothers & sisters that I found through G-PACT!
REVIEW OF G-PACT My daughter got Gastroparesis the summer after 9th grade. Everyone assumed that with a diagnosis there was a cure- there is not. We went through years of Dr's visits, testing that lead to more diagnoses but no more help, feeding tudes, surgeries, and years of struggling to eat, throwing up, chronic constipation, lack of energy, chronic pain, depression, and more. This was my daughter's high school years. At the time, there was virtually no information on this illness and our physicians at one of the best children's hospitals in the world offered little to us but more feeding tubes and surgeries. G-Pact was a source of information and most importantly a way to connect with other people who were suffering from the same illness. My daughter was one of the lucky ones! Her Gastroparesis has resolved, for now. Although she suffers from another conidtion that challenges her on a daily basis, she is leading a relatively normal life. That is not the case for thousands of Gastroperesis and Chronic Intestinal pseudo obstruction victims who cannot lead a normal life, have a meal, go to the movies, or even get out of bed. At its worst, this is a death sentence. So I continue to volunteer with this organization which is run solely by sick people and their families who continue to raise awareness and reach those who have no other lifeline in the hope that some day no other people will have to suffer with this terrible, gravely debilitating and relatively unknown illness.
This has been the only place I have found that is informative, supportive and most of all a place where you find people who understand. My daughter has had gatroparesis for 2 years and this has been a life line for us as for her doctor to obtain information and support.
I first found G-PACT via a friend and was directed to their Yahoo! Chat Group. I had been recently diagnosed with Gastroparesis and could barely pronounce the name let alone comprehend what was going on with my body. From there, in those early years I moved with them to Facebook and the information, support, restaurant cards and other information has continued to help me face my illness with courage, dignity and grace. I later developed Chronic Intestinal Pseudo-Obstruction in addition to esophageal dysmotility and through the journey I have had G-PACT and access to all of the support groups and open door policy for asking questions. I later joined as a volunteer so that I could find a way to "give back" if only a small amount of what the organization had given so freely to me. Also, the gift of information and support they gave to me in the early days and during this journey I wanted to make sure continued to the many that are newly diagnosed. Medical Awareness and Research is severely needed for GP/CIP and other digestive motility disorders (DTP) but G-PACT helps to fill a gap otherwise left open by the medical community. Does not matter the age, race, religion, or any other factors, if you have a digestive motility disorder or are a family member, friend or the care provider of someone diagnosed, G-PACT is there.
My teenage daughter has gastroparesis...we'd never heard of the condition before her diagnosis. This site has been such a wealth of information and positive support for us.
g-pact has been an absolute blessing to me - i have had gp for 19 years now and without the group i would never have even known others suffered the same disease. i didnt know there were treatment options had no idea about gp diets. medications, surgeries etc - so informative and incredibly supportive . I cope day to day because i can access gpact at any time and i consider it extremely vauable alongside my medical carers
G-PACT has been the most helpful source for my learning about my incurable disease Gastroparesis. There is a multitude of information that can be found no where else. I appreciate them greatly!
I've had Gastroparesis for 3 1/2 years. I'm so happy that I found G-PACT. Nobody understands this disease, and G-PACT has educated me far beyond what the doctors ever have. The members of this group are like my extended family now. There is a constant stream of information being shared between the members. Everything from symptoms to helpful hints and emotional support. I believe that this is the best support group, ever!
I have had Gastroparesis since I was 19 and have seen so many doctors and tried so many different medications with no positive outcome. G-PACT helps me everyday, whether it is a simple positive quote if I am feeling sick that day or being able to read others stories of success or failure. I have learned more from this nonprofit than I did face to face with a GI specialist. Thank you!
G-Pact is so informative and is an avenue where I can have support with others that are diagnosed with Gastroparesis, like me. Since Gastroparesis is not a well known illness, I do not know anyone personally in my area. G-Pact puts me in contact with others with motility problems for support and guidance.
I was recently diagnosed with Gastroparesis, and there is little known about the disease. The G-PACT has been crucial in my care, from helping me to find doctors locally to knowing what I should and shouldn't eat on a daily basis. WONDERFUL Organization!
When I was diagnosed with Gastroparesis is 2007, I could not find a doctor who had anything but the most basic knowledge about the disease. Through an Internet search, I found G-PACT's website and learned so much about my disease. I contacted them and was sent the contact info of medical specialists in my area, a card to show at restaurants to avoid table minimum charges while going out with friends, and awareness bands that I wore and gave out to my friends and colleagues. I was also added to forums that G-PACT hosts on Facebook, Yahoo, and Inspire, and found an entire community of Gastroparesis patients who are now my friends and my support system. G-PACT kept me from sinking into the isolation that many patients with chronic illness face. Through their work, I have become knowledgeable, empowered, and a powerful advocate for myself and others!
When I was diagnosed with gastoparesis seven years ago, I had never heard of the disease. I would spend hours online trying to find information about the disease and despite the information, I still felt so alone. There wasn't anyone in my circle of friends or family that truly knew what I was going through. Then, I found G-PACT. Not only did I receive great information about gastroparesis, more importantly, I found a support system. I found people who knew and understood what I was going through. Having that support system has helped me more than words can express. I have since started volunteering with the organization and am proud to be a part of a group of dedicated volunteers who fight for better treatments and a cure.