Cure JM Foundation
Cure JM Foundation
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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
Be A Hope Hero 2023
zhlédnutí 9Před 11 měsíci
Be A Hope Hero 2023
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
"Lemons To Lemonade For Kids"
zhlédnutí 95Před rokem
"Lemons To Lemonade For Kids"
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
NLC Accomplishments
zhlédnutí 44Před rokem
NLC Accomplishments
Why Julie Walks
zhlédnutí 110Před rokem
Why Julie Walks
Yield Giving Grant Video
zhlédnutí 68Před rokem
Yield Giving Grant Video
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
JM Warrior, Sturgill's Journey of Hope
zhlédnutí 213Před rokem
JM Warrior, Sturgill's Journey of Hope

Komentáře

  • @SeoExpertKabir
    @SeoExpertKabir Před 5 měsíci

    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?

  • @mandywoodberry3583
    @mandywoodberry3583 Před 7 měsíci

    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.

  • @user-xj4ub8dc4l
    @user-xj4ub8dc4l Před 8 měsíci

  • @user-xj4ub8dc4l
    @user-xj4ub8dc4l Před 8 měsíci

    كيف احصل على هذا الدواء

  • @suzanneedison9766
    @suzanneedison9766 Před 11 měsíci

    Alex made me cry re: the little girl inside her...

  • @suzanneedison9766
    @suzanneedison9766 Před 11 měsíci

    Shannon is the most enthusiastic fundraiser and family support person I have ever met.

  • @nicolemeyer9046
    @nicolemeyer9046 Před rokem

    Thank you for providing this info! Please keep searching/researching.

  • @wyatankurtis8679
    @wyatankurtis8679 Před rokem

    👊 "Promo SM"

  • @doctorv9336
    @doctorv9336 Před rokem

    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!

  • @sunilgupta2508
    @sunilgupta2508 Před rokem

    Please 🙏 hury up

  • @JustMeKaylaB
    @JustMeKaylaB Před rokem

    czcams.com/video/8654hsnwOjs/video.html

  • @Becks.V.
    @Becks.V. Před rokem

    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.

  • @pnaresh5146
    @pnaresh5146 Před rokem

    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🎊🎊

  • @anjalikulkarni603
    @anjalikulkarni603 Před rokem

    Mi2 anitbody positive means what?

  • @saravanans-tu2py
    @saravanans-tu2py Před rokem

    Mam pls request msm iam tamilnsdu writting my daughter jdm disease 5 years cheenai ramachandra hospital treatment why years cure

  • @graham9316
    @graham9316 Před rokem

    p̲r̲o̲m̲o̲s̲m̲ 👏

  • @maskermedismccons3090

    Thank you for information about ivig , from Indonesia Jojo

  • @anoukpovel
    @anoukpovel Před 2 lety

    What about 'rare' adults having JDM? Is there some information about recognizing flares and the use of medication to get into remission again?

  • @huddyhowell6469
    @huddyhowell6469 Před 2 lety

    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.

  • @thagrintch
    @thagrintch Před 2 lety

    Can you be eligible for IVIG if you have good IgG values but extremely low B cell values?

    • @kristinwallace6551
      @kristinwallace6551 Před rokem

      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)

  • @tommy.schreiner
    @tommy.schreiner Před 2 lety

    Thanks so much for your efforts

  • @TheWiesle
    @TheWiesle Před 2 lety

    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

  • @MohamedAli-bi5bl
    @MohamedAli-bi5bl Před 2 lety

    I am muscular dystrophy patient

  • @MohamedAli-bi5bl
    @MohamedAli-bi5bl Před 2 lety

    Prize

  • @elenatewmey5267
    @elenatewmey5267 Před 2 lety

    Thank you again.

  • @casterakabadman805
    @casterakabadman805 Před 2 lety

    They need to aspirate during administration

  • @freecat1278
    @freecat1278 Před 3 lety

    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.

    • @freecat1278
      @freecat1278 Před 2 lety

      @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.

  • @SashaRules-24hrs
    @SashaRules-24hrs Před 3 lety

    What if you noticed small blood in the end of the line when you inserted?

  • @angelofheaven9120
    @angelofheaven9120 Před 3 lety

    Mam , plzz find out a medicine for Ichthyosis skin disease.. It's my request🙇😖😖

  • @g.drichard4745
    @g.drichard4745 Před 3 lety

    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...

  • @morlis2052
    @morlis2052 Před 3 lety

    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.

  • @catelyncat6441
    @catelyncat6441 Před 3 lety

    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.

  • @donisaac702
    @donisaac702 Před 3 lety

    All thanks to dr ishiaku who helped me get rid of my herpes virus completely with his herbs

  • @elizabethcolt2278
    @elizabethcolt2278 Před 3 lety

    I'm so grateful to dr isibor on youtube

  • @elizabethcolt2278
    @elizabethcolt2278 Před 3 lety

    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.

  • @bradpittsburgh9049
    @bradpittsburgh9049 Před 3 lety

    Dr Erayo on CZcams has permanent cure for herpes virus with natural herbal medicine.

  • @loramori8214
    @loramori8214 Před 3 lety

    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

  • @nesting.nursery
    @nesting.nursery Před 3 lety

    I have Jm and I have had depression and anxiety for many years.

    • @edieramos6261
      @edieramos6261 Před 3 lety

      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

  • @Zaheerahmad-cy2bm
    @Zaheerahmad-cy2bm Před 3 lety

    English ka test la rahiy han

  • @prompt_luxe
    @prompt_luxe Před 3 lety

    Why aren't there subtitles ?

  • @mommysandra4576
    @mommysandra4576 Před 3 lety

    My daughter is starting IVIG monthly doses Should we get a port put in?

    • @FBlibirisi
      @FBlibirisi Před 2 lety

      Hi! How's treatment is going ? Is there any side effects ?

    • @tnicolle41
      @tnicolle41 Před 2 lety

      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?

    • @lilysacco3408
      @lilysacco3408 Před rokem

      @@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!

    • @dalenesbitt
      @dalenesbitt Před rokem

      @@lilysacco3408 how much does a port get in the way of everyday life? Can you go swimming?

  • @tarastewart4994
    @tarastewart4994 Před 3 lety

    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.

  • @walecole248
    @walecole248 Před 3 lety

    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.

  • @mommysandra4576
    @mommysandra4576 Před 3 lety

    Thank you fo this video!!

  • @doctorakhigbe9095
    @doctorakhigbe9095 Před 4 lety

    @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

  • @micotheentrepreneur
    @micotheentrepreneur Před 4 lety

    Check out facebook.com/PGSBYMTC. This may help with teenagers and young adults.