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Видео

NBTS Head to the Hill Welcome Reception and Ependymoma Awareness Day Event
Просмотров 2334 месяца назад
Ependymoma Awareness Day was held on May 5, 2024 in connection to the Race for Hope in Washington, D.C. and the National Brain Tumor Society flagship advocacy event, Head to the Hill. Ependymoma community members were invited to attend the Welcome Reception that included a time to connect with community members. As a special way to acknowledge the day, there was a creative art experience led by...
2024 Ependymoma Awareness Day - Research Partner Compilation Video
Просмотров 4195 месяцев назад
Ependymoma Awareness Day (EAD) was established in 2012 by the CERN Foundation as part of a global effort to shine a light on this poorly understood disease. Our goal with Ependymoma Awareness Day is to increase public recognition of this rare tumor and the urgent need for more clinical studies to improve diagnostic methods, develop better-targeted treatments and improve outcomes for those livin...
Tiffany Crowe's Full Ependymoma Awareness Day Speech
Просмотров 8 тыс.10 месяцев назад
Tiffany Crowe is an advocate, brain tumor community leader, friend and ependymoma survivor. She tries to enjoy life and doesn’t dwell on her diagnosis. To Tiffany, surviving is all about holding onto hope as well as flipping your perspective on life. Tiffany shares “I don't think I would be where I am if I didn't try to maintain a positive outlook throughout this journey.”
Ryan Rasul's Full Ependymoma Awareness Day Speech
Просмотров 10010 месяцев назад
Ryan Romaine Rafiq Rasul is a scholar, basketball champion, community leader, author, miracle kid, founder of Little Hands Academy and ependymoma survivor. Ryan shares “I hope people learn to keep pushing and that it’s never too late. Even when I had cancer and I had to undergo my first surgery, we still kept hope and we never gave up. So keep believing and it's never too late.”
2023 Ependymoma Awareness Day - CERN Foundation, a program of the National Brain Tumor Society
Просмотров 797Год назад
Participants in Head to the Hill and members of the ependymoma community gathered for a Welcome Reception & Butterfly Release to commemorate Ependymoma Awareness Day. This highlight video features stories from the ependymoma community and concludes with a butterfly release to honor loved ones with ependymoma, recognize care partners and medical workers, and support ependymoma research efforts.
Ependymoma Awareness Day 2023- Dr. Sriram Venneti gives update on R01 Grant launched from fellowship
Просмотров 185Год назад
Dr. Sriram Venneti gives and update on ependymoma research efforts and recognizes the importance of acknowledging Ependymoma Awareness Day!
Ependymoma Awareness Day 2023 - 2022 CERN and Robert Connor Dawes Scientific Fellowship Update
Просмотров 143Год назад
Kendra Maaß, scientist at the Hopp Children's Cancer Center Heidelberg (KiTZ) and the German Cancer Research Center (DKFZ), has received the CERN Robert Connor Dawes Scientific Fellowship awarded by the National Brain Tumor Society. For the project, Maaß is investigating specific factors in the formation, release and uptake of so-called vesicles. These are transport sacs that cells use to trans...
Welcome to the 2023 Ependymoma Awareness Day from CERN Foundation, a program of NBTS
Просмотров 54Год назад
Ependymoma Awareness Day (EAD) was established in 2012 by the CERN Foundation as part of a global effort to shine a light on this poorly understood disease. Our goal with Ependymoma Awareness Day is to increase public recognition of this rare tumor and the urgent need for more clinical studies to improve diagnostic methods, develop better-targeted treatments and improve outcomes for those livin...
Ependymoma Essentials - Episode 3: An Update on the ACNS0831 Clinical Trial
Просмотров 50 тыс.Год назад
Ependymoma Essentials - Episode 3: An Update on the ACNS0831 Clinical Trial (Feat. Drs. Smith, Foreman, Ellison and Tamiko Toland) The purpose of this episode is to learn more about the status of the ACNS0831 trial, understand the significance of the trial to pediatric ependymoma research, and get clarity on how the results might impact the ependymoma community now and in the future.
CERN Foundation Community Members Sharon and Finn
Просмотров 101Год назад
Ependymoma Mom Sharon shares an important message at the 2022 Ependymoma Butterfly Release Ceremony.
Ependymoma Essentials - Episode 2: Radiation Therapy for Pediatric Ependymoma
Просмотров 5082 года назад
The Ependymoma Essentials video series is specifically designed for families in the early stage of diagnosis and treatment of children with ependymoma. This project aims to create educational videos that communicate reliable and trustworthy information in collaboration with leaders in the ependymoma community. The second episode focuses on radiation therapy for pediatric ependymoma featuring Dr...
Ependymoma Essentials - Episode 1: Newly Diagnosed Pediatric Ependymoma
Просмотров 1 тыс.2 года назад
Ependymoma Essentials - Episode 1: Newly Diagnosed Pediatric Ependymoma (Feat. Dr. Amar Gajjar @StJudeResearch and Tamiko Toland) by @CERNFoundation
Ependymoma Molecular Groups Explained
Просмотров 1,2 тыс.3 года назад
Dr. Kristian Pajtler, 2018 CERN Scientific Fellowship Recipient, from KiTZ Hopp Children’s Cancer Center in Heidelberg, Germany, gives a patient friendly presentation on the recent advancements made on the ependymoma molecular groups and why this is important to the ependymoma community.
Kids Interview the Doctor - What is Ependymoma?
Просмотров 3 тыс.3 года назад
Kids Interview the Doctor - What is Ependymoma?
Behind-the-Scenes Ependymoma Lab Tour
Просмотров 1793 года назад
Behind-the-Scenes Ependymoma Lab Tour
Ependymoma Awareness Day May, 10 2021
Просмотров 1,2 тыс.3 года назад
Ependymoma Awareness Day May, 10 2021
PNOC Ependymoma Working Group Video Message
Просмотров 1593 года назад
PNOC Ependymoma Working Group Video Message
2020 Ependymoma Awareness Day
Просмотров 5604 года назад
2020 Ependymoma Awareness Day
Kimberly Wallgren
Просмотров 1024 года назад
Kimberly Wallgren
Chas Haynes
Просмотров 624 года назад
Chas Haynes
David Arons
Просмотров 574 года назад
David Arons
Dr. Gene Hwang
Просмотров 4564 года назад
Dr. Gene Hwang
Dr. Amar Gajjar
Просмотров 3134 года назад
Dr. Amar Gajjar
Dr. Mark Gilbert
Просмотров 1294 года назад
Dr. Mark Gilbert
Gretel
Просмотров 2254 года назад
Gretel
Kevin and Family
Просмотров 1864 года назад
Kevin and Family
Haruki and Family
Просмотров 2404 года назад
Haruki and Family
Kristin
Просмотров 724 года назад
Kristin
Mitch and Allie
Просмотров 2594 года назад
Mitch and Allie

Комментарии

  • @azimpremji9178
    @azimpremji9178 2 месяца назад

    I feel so blessed again in my marriage after Doctor Oku brought back my husband that separated with me for a good 3 months. Even though I have mouths all over my body, it won\'t be enough to thank Doctor Oku for his help in my life. My husband separated with me for 3 months and has been in pain and agony without him. So, I searched for help everywhere but nothing worked out, not until I meant Doctor Oku who I contacted online. I explained my situation to him and he promised that my husband will get back to me within 48 to 72 hours as long as my heart still beats for him. I believed in him and he prepared a spell for me and my husband called me exactly when Doctor Oku said. He pleaded and said he needs me back and now we are living happily again for the past 9 months. Everyone out there reading my article that needs help should contact him... Email: okutemple@gmail.com or whatsApp him +2347053113465

  • @helenebock2684
    @helenebock2684 6 месяцев назад

    This mom of a 15 year survivor thanks you for sharing your story and your heart. May a long happy life be yours! ❤️

  • @EwaRytel-h3q
    @EwaRytel-h3q 8 месяцев назад

    Co u was slychać jak czuje sie żona?

  • @leedee4968
    @leedee4968 Год назад

    Wow

  • @AngryDavidBlackenborough
    @AngryDavidBlackenborough Год назад

    Live long 💖

  • @JasonJacksonJames
    @JasonJacksonJames 2 года назад

    JW brother ❤️

  • @JacobBen94
    @JacobBen94 2 года назад

    CERN are child molesters and traffickers

  • @kionabegshisown8043
    @kionabegshisown8043 3 года назад

    Which who grade was the ependymoma.

  • @TheLuchyboy
    @TheLuchyboy 3 года назад

    Basically my younger brother (38) was diagnosed and operated on for a Myxopapillary ependymoma of the conus and filum terminale in 2008 at Kings college hospital. Within the last two-three years he has been suffering with some severe back pain and what can only be described as a faecal smell sometimes emanating from his bodily odour. He occasionally has trouble controlling his bowel movements that are rarely ‘normal’. We’ve pursued it with the NHS to no avail but I am worried about his mental state now as he feels that this is the ‘beginning of the end’ for his career and for his legs basically. It’s getting reasonably serious as every day that passes, his reluctance to leave the house grows. Are you familiar with such symptoms so long after surgery? Look forward to hearing from you. Many thanks James, concerned older brother UK

  • @mlgauss60435
    @mlgauss60435 3 года назад

    Keep up the good work, the world needs it. I lost my first born daughter to an Ependemoma 38 years ago. There is a study on her at the Iowa City Hospital, in Iowa. Her first surgery was in Dubuque, Iowa. Her name was Angela A Alexander. Bless all who is working on discovering more on this cancer.

  • @sheenap9183
    @sheenap9183 3 года назад

    God Bless each and every Ependymoma survivor as well as their families. Fellow adult spinal Ependymoma survivor

  • @lauriehood9624
    @lauriehood9624 4 года назад

    Dr. Gajjar was our doctor. He is absolutely amazing!!

  • @joaquimbroteroduprat6270
    @joaquimbroteroduprat6270 4 года назад

    Hi Allie and Mitch. How can i contact you? My wife is with an recurrent anaplastic Ependymoma as well.

  • @mlgauss60435
    @mlgauss60435 4 года назад

    God bless you and your family. I'm so glad to hear that your son is doing well. I lost my oldest daughter, 36 years ago, to an Ependemoma. It started when she was 8 and she passed just a month shy of her 13th birthday. It was at the base of her brain, the size of my fist, and they could not remove all of it. Yes, she went through a round of radiation treatments also. Back then, they knew very little of this type of tumor. We lived in Iowa, and in fact, they did a study on her at the University of Iowa City hospitals. Somewhere out there is a book about her. I'm hopeful that this study has helped others. May your son continue to do well!❤

    • @CERNFoundation
      @CERNFoundation 4 года назад

      Thank you Mary Lou for sharing. We are so very sorry for your loss.

    • @mlgauss60435
      @mlgauss60435 4 года назад

      @@CERNFoundation thank you...maybe someone can get to that library at the UIC? Might help someone else!

  • @leedee4968
    @leedee4968 4 года назад

    Hang in there brother , I had a 12 hour brain surgery only fourth ventricle between the cerebellum and the brain stem for an ependymoma 27 years ago and I'm still kicking by the Grace of Gawd✔️

  • @kevinmoore2501
    @kevinmoore2501 4 года назад

    You’re far from alone, Anthony. I had a similar case when I was 15 years old, and, after surgery twice, radiotherapy, and now, chemotherapy, as well as adjunct radiotherapy, I was in the same boat, but, my ependymoma wasn't in the spine, it was in the posterior fossa, just above my brain stem. Lots of therapy, and about 10 years later, I feel like I am where I was before my diagnosis. Stay strong, and focused on recovery. I wish you the best.

    • @CERNFoundation
      @CERNFoundation 4 года назад

      Thanks for sharing Kevin. Please let us know if there is anything we can help you with. You can learn more about ependymoma and available resources on our website at cern-foundation.org.

  • @mlgauss60435
    @mlgauss60435 5 лет назад

    Wish they had more information about these 36 years ago! 😥

  • @kevinmoore2501
    @kevinmoore2501 5 лет назад

    Good video. Liked, and subbed to this channel. Gives good info about ependymoma research, and treatment.

  • @mlgauss60435
    @mlgauss60435 5 лет назад

    Thank you for sharing and keep flying high! In memory of my daughter, Angela. ❤

  • @mlgauss60435
    @mlgauss60435 5 лет назад

    You are a very lucky woman. I lost a 12 year old daughter to an Ependemoma, but that was almost 36 years ago and not much was known about it. Supposedly there is a work up on her case at the University of Iowa City hospital, but I was never allowed to see it. God bless you!

    • @Legion_For_We_Are_Many
      @Legion_For_We_Are_Many 3 года назад

      Sorry for your lost

    • @laurarosser236
      @laurarosser236 3 года назад

      @@noniof2595 Amen to that ! I lost my oldest child to brain cancer six years ago . . He die 2 weeks after he was diagnosed. I miss my son , so much. The pain never goes ago you just finally learn how to cope .

    • @tanyat1896
      @tanyat1896 3 года назад

      That source deserves the dignity of a name. I am so sorry for your pain. God bless you and your family. May you have peace, my friend. 🙏

    • @patsymarts6685
      @patsymarts6685 3 года назад

      🙏😟😭 I'm SO SORRY for you AND EVERYONE whO has lost a child BECAUSE IT'S ONE of the hardest things to EVER go through AND live a NORMAL life again! THE ONLY COMFORT is THAT THEY ARE WITH OUR FATHER in HEAVEN AND ARE SAFE AND MOST DEFF HAPPY IN HIS ARMS UNTIL THEY SEE THEIR FAMILIES AGAIN.THAT'S WHAT HELPS , BUT DON'T LESSON THE PAIN, BUT YOU KNOW WHAT I MEAN I'M SURE.GOD BLESS YOU ALL!

    • @jhicks8829
      @jhicks8829 3 года назад

      im sorry for your lost. may GOD be with you and your family

  • @beverlyharding2785
    @beverlyharding2785 6 лет назад

    Thank you for what you do! I'm 22 years post-surgery for my spinal ependymoma (C2-T4). Thanks to Dr. Welch! :-)

  • @kevinmoore2501
    @kevinmoore2501 6 лет назад

    Good vid. I’m a 23 year old male, currently dealing with a 3rd recurrence of this cancer. I had it surgically resected at 15 (I was lucky enough to find a neurosurgeon willing to work on me), and have also had a recurrence treated via radiotherapy at around 21. Because of complications due to meningitis post-op, I have a permanent issue with hydrocephalus, as well as issues with my balance, most likely due to the meningitis damaging my cerebellum, which ended up being resected anyway, because it was virtually totally scar tissue at the time. I appreciate, and enjoy this channel, and how it explains in a calm, informative way about how to handle this condition.

    • @blakhoward1369
      @blakhoward1369 5 лет назад

      Kevin Moore my wife has this too the first surgery was 8 pound in within 6 months it come back... if u have any advice plz share if me... god bless

    • @kevinmoore2501
      @kevinmoore2501 4 года назад

      Blak Howard If I’m being totally honest, I’m not totally sure, because, in my case, the tumor is recurrent. I wish the best with your wife's situation however.

  • @NailArtQueen
    @NailArtQueen 6 лет назад

    I am a survivor! Ty so al your kindness, and making this aware foe everyone!

  • @NailArtQueen
    @NailArtQueen 7 лет назад

    I am a survivor of this cancer..

  • @NailArtQueen
    @NailArtQueen 7 лет назад

    Thank you so much for this I am a survivor of this cancer! God bless all of you.

    • @DiannasHomestead
      @DiannasHomestead 7 лет назад

      Nail Art Queen God bless my beautiful friend 😘

  • @Melissanailzcliques
    @Melissanailzcliques 8 лет назад

    such a beautiful video 💙

  • @NailArtQueen
    @NailArtQueen 8 лет назад

    I am also a survivor of this cancer..

  • @aiguoli2238
    @aiguoli2238 8 лет назад

    This is fantastic idea to have an awareness day for Ependymoma. Using the butterflies to represent hopes - what a wonderful idea.

  • @Melissanailzcliques
    @Melissanailzcliques 8 лет назад

    this was so beautiful 💛

  • @rositavela2155
    @rositavela2155 8 лет назад

    Sweer,Rosita.soul survival and A True believer of this Deadly disease.So Sorry to hear that u had this problem.But i know for a fact you have an Angel that has permission from jesus to help you fight this and you have.and because you believed that jesus has the power to dismiss your disease then you are held .so yes i believe that jesus will heal lots and lots of others as well cuz their is power in his name.and the devil is a liar.cuz sickness doesn't belong to jesus.so i raise my hands to the most high and believe that our lord has the power to do the healings.Amen.so yes Rosita my deepest from my outter heart.i am so glade u are heal.cuz i beleave it.I will pray for those others who yet need our prayers and for ourselves too.God Bless My Friend,Rosita.👏👏👏🙏🙏🙏🙏🙏🙏🙏👏👏👏👏👏

  • @NailArtQueen
    @NailArtQueen 8 лет назад

    I had this type of Cancer.(spinal cord)

    • @Tata-iu3fy
      @Tata-iu3fy 8 лет назад

      you continue to amaze me more and more every day

    • @NailArtQueen
      @NailArtQueen 8 лет назад

      Aww Thank you hun.. I am blessed. (graces from god)

    • @jahairasnails
      @jahairasnails 8 лет назад

      +Nail Art Queen this was amazing,,thank u so much for being the person u r hun,,,xoxox all day hun,,

    • @queenofblingnailsandbeauty
      @queenofblingnailsandbeauty 8 лет назад

      +Nail Art Queen i swear i admire you more and more everyday you are such a strong women and im so sorry you had to go through all you did love you girl Fight on 👏👏👏😘😘😘😘

    • @NailArtQueen
      @NailArtQueen 8 лет назад

      Thank you, All I can say is I am blessed with family and good friends that help me fight, and strong. But I wanted people to beaware of this cancer because its so rare and unspoken of.

  • @ericbailey6779
    @ericbailey6779 9 лет назад

    From my personal experience, I would say that its important not to gloss over the pain when it comes to diagnosis. Just from anecdotal evidence from talking to others with back issues. It's unlike a lot of other kinds of back issues. Or rather, the pain and symptoms combine in unusual ways. I went years with no health insurance. Free clinics told me it was peripheral neuropathy due to diabetes (which I didn't have). A chiropractor told me it was a slipped disk. When I finally saw a specialist, I could barely walk without a cane. The surgeon said the ependymoma he removed from my lower back was close to 6 inches long. He said he was surprised that I could stand. It took years before someone decided to do a simple nerve conduction study and realize that my pain was real. I even had a few places openly suggest that I just wanted pain medication, even after I refused the drugs.

    • @robertliz8776
      @robertliz8776 6 лет назад

      I'm going through the same thing I just want to be fixed so I can live like I was half body asleep on left side I had no symptoms and had surgery immediately but now they refuse to help any further I live in Evansville, IN

  • @pegsmith1939
    @pegsmith1939 9 лет назад

    Look for our dear Princess Warrior Mimi in the video!

  • @nikkiscott3634
    @nikkiscott3634 10 лет назад

    Call the, Mayo Clinic, Rochester, MN. They have awesome doctors who as well helped me with my ependymoma. I live in Nebraska and we didn't have the surgeon who had the ability to do the surgery. My husband and I got on the internet and within a week I had an appointment. The best of luck. GOD BLESS!

    • @melaniecory5428
      @melaniecory5428 6 лет назад

      Rita Scott Who did your surgery at the Mayo Clinic or who did you see?

  • @nikkiscott3634
    @nikkiscott3634 10 лет назад

  • @marialugo8382
    @marialugo8382 10 лет назад

    My mother suffer for an ependymoma in the spinal cord, but unfortunately in mexico the imss doesn't not want to removed due to her edge only 67 yrs. so hope I can find some neuroseguen to help her.

  • @johnsoncpa
    @johnsoncpa 11 лет назад

    Butterflies are fun. Good health to all.

  • @brub58
    @brub58 11 лет назад

    Awesome and inspiring!

  • @TheresaESkira
    @TheresaESkira 12 лет назад

    Renewal, inspiration and hope is possible with the CERN foundation fighting for us. I'm an ependymoma survivor. Thank you for this important research. Theresa S.