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Cure JM Foundation
Registrace 8. 02. 2014
The Cure JM Foundation is a 501(c)(3) nonprofit dedicated to finding a cure for Juvenile Myositis (JM), a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues. Approximately 2 to 4 children in a million in the United States are diagnosed with JM each year.
Through nationwide grassroots fundraising efforts, Cure JM Foundation has raised over $13 million for JM research and education. These funds have been used to help establish JM Research and Treatment Centers of Excellence at the Ann & Robert H. Lurie Children’s Hospital of Chicago, George Washington University in Washington, D.C., Duke Children's Hospital and Medical Center, and Seattle Children's Hospital. In addition, Cure JM Foundation has funded a wide range of genetic and JM treatment studies, as well as fellowships. Cure JM also co-produced the first-ever book on JM, Myositis and You, featuring contributions from over 80 experts and medical professionals.
Through nationwide grassroots fundraising efforts, Cure JM Foundation has raised over $13 million for JM research and education. These funds have been used to help establish JM Research and Treatment Centers of Excellence at the Ann & Robert H. Lurie Children’s Hospital of Chicago, George Washington University in Washington, D.C., Duke Children's Hospital and Medical Center, and Seattle Children's Hospital. In addition, Cure JM Foundation has funded a wide range of genetic and JM treatment studies, as well as fellowships. Cure JM also co-produced the first-ever book on JM, Myositis and You, featuring contributions from over 80 experts and medical professionals.
Be a "Hope Hero" with us!
Cure JM Mom, Shannon Malloy breaks down how and why to join our 2024 Giving Tuesday Holiday Challenge and the lasting impact that your efforts make for kids, teens, and young adults battling juvenile myositis.
zhlédnutí: 96
Video
IVIG - What Families and Patients Need to Know
zhlédnutí 198Před 2 měsíci
Hear from a panel of four experts about IVIG, including important tips for a successful IVIG journey. Presenters include: VP of Patient Advocacy Michelle Vogel, MPA at IV Solutions RX, Heather Tory, MD, MPH, CPPS, a Pediatric Rheumatologist and Associate Chief Quality and Patient Safety Officer at Connecticut Children’s, Laurel Cherwin, BSN, RN, IgCN an immunology Clinical Nurse Educator, Medic...
Town Hall June 2024: The Potential of JAKs fighting JM
zhlédnutí 209Před 2 měsíci
In our June 2024 "Ask the Doc" Town Hall, Dr. Julie Paik joins in a Q&A session to shed light on what JAK inhibitors are, how they work in JM when parents might consider discussing JAKs as a treatment option, and the pros and cons of their use. 0:00 - 3:00: Introduction to Dr. Paik and session overview 3:01 - 7:15: History of JAKs & early use in JM 7:15 - 13:50: Early studies & results in JM 13...
Town Hall June 2024: Helping Parents & Kids When They Express High Emotional Distress
zhlédnutí 78Před 3 měsíci
This expert-led presentation is for parents about how to help their kids and themselves when their kids express high levels of emotional distress. Our presenters will talk about ways parents can calm themselves, share tips for talking to kids with age-appropriate information, and know when to find help from a professional. There will be a Q&A session immediately following the presentation. Intr...
Cure JM Patient Advocate James Best at NIH Rare Disease Day
zhlédnutí 21Před 6 měsíci
JM Patient Advocate James Best presents a Proclamation of Thanks to Dr. Joni Rutter of NCATS for their critical work in drug discovery for better treatments without the side effects of today's therapies.
Walk Strong with Us - For a Brighter Future!
zhlédnutí 154Před 7 měsíci
We’re walking for a brighter future! Join hundreds of Cure JM families taking steps toward better treatments and a cure. Create your walk team today to rally around our warriors and celebrate the power of community! Visit www.curejm.org/walkstrong for full details, and a list of 2024 Walk Strong events.
Thank you, Hope Heroes!! Season of Hope 2023
zhlédnutí 94Před 8 měsíci
Thank you goes out to all of our hope heroes who spread generosity and hope this season, allowing us to improve treatments and care for JM kids.
Cure JM Mission Film - "Our Mission, Our Impact"
zhlédnutí 458Před 9 měsíci
We are honored to share our new short film, “Our Mission, Our Impact,” highlighting the core aspects of our mission, working together to make life-changing impacts for the patients and families we serve. Please join us in celebrating the impacts of our work on the lives of our patients, families, and the rare disease community by making a gift and sharing this short film. www.curejm.org/givehop...
Greg Gadson Speech // D.C. Family Conference 2023
zhlédnutí 57Před 9 měsíci
Greg Gadson U.S. Army Veteran
Get Involved - Help Move Our Mission Forward
zhlédnutí 41Před 10 měsíci
Hear from different JM parents, volunteers, and staff why they are actively involved in Cure Jm's mission. 0:00 - 0:39 - Shannon Malloy - JM Parent & Family Engagement speaks to our mission 0:39 - 1:22 - John Caldwell - JM Dad & Volunteer speaks to why he's involved 1:24 - 1:46 - Julie Houpt - JM Mom shares the impact of being involved 1:47 - 2:23 - Anna Ramsey - JM Patient shares how being inv...
Ask the Doc" October 2nd - Partnerships in Developing New JM Treatments
zhlédnutí 58Před 10 měsíci
In October, Cure JM had two speakers give an update about drug discovery in juvenile myositis. Joni L. Rutter, Ph.D., Director, National Center for Advancing Translational Sciences, National Institutes of Health, updated families about the process of drug discovery and development and how partnerships like Cure JM’s NCATS partnership accelerate new treatments for juvenile myositis. Eric Hoffman...
JM Patient Advocates Panel - Part 2
zhlédnutí 96Před 10 měsíci
In this video series, a group of young adult JM patient advocates discuss the impact of support, fundraising, and why they participate in programs like our Holiday Challenge leading up to Giving Tuesday. 0:00 - 2:50 The lasting impact you want hope comes from our progress 2:51 - 5:55 Programs and research that excite me as a JM patient advocate 5:57 - 7:59 The power comes from participating in ...
JM Patient Advocates Panel - Part 1
zhlédnutí 136Před 10 měsíci
In this video series, a group of young adult JM patient advocates discuss the impact of support, fundraising, and why they participate in programs like our Holiday Challenge leading up to Giving Tuesday. 0:00 - 3:43 Being a JM patient and also a Giving Tuesday fundraiser 3:44 - 5:13 What impact does Giving Tuesday have on you as a patient? 5:14 - 7:20 What lasting impact can be made through Giv...
September 2023 - Grandparent Council Meeting
zhlédnutí 40Před 11 měsíci
September 2023 - Grandparent Council Meeting
Getting a Timely and Accurate JM Diagnosis - Dr. Megan Curran
zhlédnutí 222Před 11 měsíci
Getting a Timely and Accurate JM Diagnosis - Dr. Megan Curran
Hear from Shannon why hope is in the research!
zhlédnutí 111Před 11 měsíci
Hear from Shannon why hope is in the research!
Ways to help your kids and yourself cope living with JM
zhlédnutí 82Před 11 měsíci
Ways to help your kids and yourself cope living with JM
2023 National Walk Strong Day - Washington D.C.
zhlédnutí 113Před rokem
2023 National Walk Strong Day - Washington D.C.
Cure JM 20th Anniversary - A Visual Journey Through Time
zhlédnutí 155Před rokem
Cure JM 20th Anniversary - A Visual Journey Through Time
Dr. Angeles-Han and Dr. Marathe will present Sun Protection Tips & Tricks for Summer
zhlédnutí 219Před rokem
Dr. Angeles-Han and Dr. Marathe will present Sun Protection Tips & Tricks for Summer
Ask The Doc: Why Exercise and Nutrition Are Important In JM
zhlédnutí 196Před rokem
Ask The Doc: Why Exercise and Nutrition Are Important In JM
Exclusive Update Q&A Hear About our $2 Million research grant from Chan Zuckerberg
zhlédnutí 81Před rokem
Exclusive Update Q&A Hear About our $2 Million research grant from Chan Zuckerberg
20 Years Fighting JM -- 20 D.I.Y. Fundraisers
zhlédnutí 86Před rokem
20 Years Fighting JM 20 D.I.Y. Fundraisers
A look back at the 2019 Cure JM family Conference
zhlédnutí 67Před rokem
A look back at the 2019 Cure JM family Conference
Greetings!,I saw and analyzed your CZcams channel I found some problems. Due to Which Your videos not getting enough views, Do you Want to talk about it for a while?
My daughter was definitely diagnosed in/at the end of September. Her rash developed in May and progressively got worst throughout the summer months. Thank you so much for this amazing information.
❤
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Alex made me cry re: the little girl inside her...
Shannon is the most enthusiastic fundraiser and family support person I have ever met.
Thank you for providing this info! Please keep searching/researching.
👊 "Promo SM"
I was diagnosed with dermatomyositis 6 years ago when I was 20. I was unable to bathe my self. get up from bed and was on huge fall watch. I could only imagine what that is like for a kid. Thank you guys for what you are doing!
Please 🙏 hury up
czcams.com/video/8654hsnwOjs/video.html
I wish I'd known this 17 years ago. Thank-you for this video. . I had this illness when I was 11 years old. I've been in remission 17 years now. It came out of no where. I remember I was covered in a rash on my legs and I was so weak I couldn't dress myself, or get up off the floor, yet the doctors kept saying I was imagining it and looking for attention (as my Mum had recently died of an unexpected asthma attack a year before). .As for the rash they kept giving me creams...Long story short after a year of hell one doctor finally sent me for a skin biopsy and I was rushed into hospital and pumped with steroids (prednisone).. I was ill most of teenage years and it kept coming back. When I was 15 I went to live in Glasgow with my Auntie fir a year. In that year I stayed at York Hill Children's hospital where they kept me in for 6 weeks doing allsorts of tesrs that had never been done, as I'd moved from England and I felt I was never treated properly (another long story).. I'm writing this comment because after the tests at York Hill hospital I spoke to a wonderful doctor who suggested a new treatment but to wait until I was 16 to try it.. I moved back to England and my hospital notes were obviously transferred.. As I was 16 I was now sent to the adult part of the hospital and met a wonderful doctor in the rheumatology department...I had another flare up at 16 as the rash appeared again and I was feeling weak.. over the years the prednisone kept me as well as could be where it took my rash away and eased some weakness... The doctors always hoped I had Juvenile Dermatomyositos as I'd grow out of it but when it flared up at 16 years old they weren't sure. . My new doctor who was a rheumatologist (who was a great doctor) read my notes from the wonderful doctor at Yorkhill children's hospital, and suggested I try METHOTREXATE.. I had to sign a form as it came with warnings as it could've affected my bone marrow etc but I was brave and couldn't wait to sign even though my Dad was hesitant..but this illness ruined my childhood, you wouldn't believe me if I told you how badly I was treated...I couldn't move and no one believed me for a year.. Anyway, I remember I started feeling better. I remember the tablets were bright yellow.. and I got a job and started having fun.. I forgot I was even ill after years of pain and no help or relief.. Every check up and blood test was fine. My bone marrow and other things they were worried about , were fine. .I carried on .. Then one day at 21 years old I was given the all clear from this illness as I'd not had a flare up since i was 16 but the doctor said to me I wasn't out of the woods and if anything changed to contact him. I was taken off the methotrexate as they'd been reducing me over a year and as I was leaving the doctor reminded me not to get pregnant for atleast a year after taking methotrexate as he knew I was engaged at that time... That was nearly 20 years ago and I've been cleat of this illness. I wrote this comment as I don't know if I had the juvenile version of this disease or the methotrexate helped. The doctors didn't know. I hope there's better help and understanding for this illness today as I was ignored even though I went to the doctors every week covered in a rash and so weak I couldn’t even stand up without help. .and sometimes there wasn't any help so I would just lie down crying thinking it was in my head. The rash I had was dark purple. It got so dark because it was left untreated. I'm lucky it never caused any longterm damage but the emotional and anxiety still affects me today.. I feel for anyone who's living with this illness as I remember feeling so hopeless and misunderstood 😔 I'm so thankful I got better as I know that's rare.
Looking for a cure to that body odor problem, I recommend #drokouromi Herbal supplement and body cleanser I was able to shrink TMAU goiter with his herbs in less than 3 weeks🎊🎊
Mi2 anitbody positive means what?
Mam pls request msm iam tamilnsdu writting my daughter jdm disease 5 years cheenai ramachandra hospital treatment why years cure
p̲r̲o̲m̲o̲s̲m̲ 👏
Thank you for information about ivig , from Indonesia Jojo
What about 'rare' adults having JDM? Is there some information about recognizing flares and the use of medication to get into remission again?
That is a sorry state of existence. There can be no life on earth without the sun. We're been living under the sun for thousands of years and suddenly it will kill you? What about vitamin D and serotonin? Direct sunlight is one of the healthiest thing you can do for your body.
Can you be eligible for IVIG if you have good IgG values but extremely low B cell values?
As far as I know, no. But you would have to talk with an immunologist to be sure. All the best. (I am not a doc just a patient with common variable Immunodeficiency who is on IVIG for life)
Thanks so much for your efforts
Informed consent is the law, however IVIG has way LESS side affects than the COVID JAB, and no one was given informed consent of 9 pages of adverse reactions before they were given the JAB. Because if they did receive 9 pages of possible side affects no one would have accepted the JAB
I am muscular dystrophy patient
Prize
Thank you again.
They need to aspirate during administration
Very much appreciated. I received very little education about my illness. I'm looking to hire an advocate to sort out the disgraceful situation between my various providers. This presentation has made me more optimistic.
@Evan Hodge That's part of it. The entire neurology department is completely ignorant of how IVIG therapy should be done for my illness. The department head admitted this to me. They refuse to adjust the dose when it stops working, so I just told them to stop. He thinks the pain relief is some odd side effect; he has no understanding of how it works. The immunologist is at another facility & can't access my records. The hospital ignores all of her orders for labs & prescriptions. When I called, the supervisor answered. She didn't know who I was & she couldn't access her own records because the facility swapped her cell phone. I get no pain management & all I know about my illness is what I learn in these videos. I had one of the best doctors in the country before they shut down the Gulf War clinic. I think they want us all dead.
What if you noticed small blood in the end of the line when you inserted?
Thank you, you answered my question.
Mam , plzz find out a medicine for Ichthyosis skin disease.. It's my request🙇😖😖
Greeting from me, how I was able to survive coldsore through a friend that direct me to Dr alamale on CZcams healed hi gave me his product that get me cure...
I contracted herpes' I was told there is no Herpes cure except treatment to control it. I totally lost hope. All I could think was losing my life because it was so embarrassing to have this virus, few weeks ago I read about a possible natural cure which was guaranteed. And I ordered the treatment after some weeks I got 100% cure. Now I'm so excited to share this testimony thanks Dr omohan Email:dromohanherbalmedicine@gmail.com.
I know not pains and i recovered from my depression ever since I used a herbal medicine from Madida herbal center that I can boldly say that I am no longer HIV because I am cured from it with Dr Madida herbal medicine and I am so happy about it.
All thanks to dr ishiaku who helped me get rid of my herpes virus completely with his herbs
I'm so grateful to dr isibor on youtube
Dr isibor on youtube is God sent to cure all kind of illness and disease, I never believed that there's a cure for herpes I'm a living testimony I was a carrier of the herpes virus now I'm totally cured through his herbal medicine.
Dr Erayo on CZcams has permanent cure for herpes virus with natural herbal medicine.
Living with a virus for eternity is something you need to sit down and think. There is a cure for any type of virus and diseases. So why listen to people who will discourage you and not give you cure. Alternative cure for any type of virus, diseases and STDS available. 1; HSV1 and HSV2 2; Lupus diseases 3; Cancer 4; Human Papilloma virus (HPV) 5; Crohn's diseases 6; Diabetes 7; Sickle Cell Arnamia 8; Herpes 9; HIV 10; Neratitis 11; Diabetes 12; Pile for any health issues Contact Doctor omohan for help in ridding out your problem. WhatsApp +2348164816038 his websit dromohanherbalmedicine.webs.com
I have Jm and I have had depression and anxiety for many years.
thankfully i’m not the only one, i was diagnosed in december 2020 once i was put on prednisone my mental was not good due to weight gain, i’m still on it but not a high dose , i have 4 more months of treatment left
English ka test la rahiy han
Why aren't there subtitles ?
My daughter is starting IVIG monthly doses Should we get a port put in?
Hi! How's treatment is going ? Is there any side effects ?
My daughter, 8 yrs old is starting ivig and we have so many questions. How does and when can she function normally in life.. Did they put ports in to ease hooking up for home treatment?
@@tnicolle41 hi I’m 17 and I do ivig and I have a port! It’s a lot to get all that medicine through a regular iv I struggled with it that way. With a port it’s much better!
@@lilysacco3408 how much does a port get in the way of everyday life? Can you go swimming?
Is just six months since I got free from hsv2,,I always have some outbreak and I could not sleep at nights,hospital medications did all their possible best, it really disturbs me a lot I could not concentrate deeply on my studies,,I nearly failed my last exams.exactly 6 months ago my mum purchased a herbal remedy from Dr Osunma,,,I used it for three weeks and it cleared out the disease gradually till it was gone totally from my body.my Dr could not believe a herb can cure herpes till he ran a four times test and all the result showed negative..so don't stand there and be waiting for medical doctors or government to fix a cure for this virus,,,there is already a cure and only one man can cure it,DR OSUNMA Email adress drosunmaherbalhome@gmail.com and see things for your self.
It all started from my lips,due to the outbreak my fiance broke up with me,my family members abandoned me all because I was effected,,I could not bear all the pains I decided to struggle hard to help my self get rid of the virus,I spent awhole lot of money in hospital bills still couldn't get rid of it,,,I came in search of cure in the Internet and I saw a comment made by ROSE ALLI ROSE how she was cured from this same virus by an african traditional healer named Dr osunma,,I was skeptical about it but just couldn't hold my self from the pains I ordered for the herbal remedy.I used it as directed by the Dr ,I used it for few weeks and my lips was as fresh like that of a new born baby.it was really hard to believe that natural root and herbs can cure herpes virus.well now I understand that nature really have answers to our health problems,feel free to share your health problems with him.his email: drosunmaherbalhome@gmail.com and he is a renowned African traditional healer,,well trained.
Thank you fo this video!!
@akhigbe.dr Herbal treatment is 100% guaranteed for all kinds of infection, the reason why most people are finding it difficult to cure their infection is because they believe on medical report, drugs and medical treatment which is not helpful to cure any infection, Natural roots/herbs are the best remedy which can easily eradicate virus/diseases forever,for more information about how he cure diseases/virus please contact him on WhatsApp or Email address drakhigbehome@gmail.com +2349046230269
Check out facebook.com/PGSBYMTC. This may help with teenagers and young adults.