#helpilayda crowdfunding campaign: Interview

Help for cancer patients: FIND the right treatment and hospital.


Need this in German?
– Crowdfunding Kampagne: Rettet Ilayda

Ilayda’s Blog
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Donate now please – it makes a REAL difference

We have raised about €550,000 and we thank all those that keep donations coming in.

This blog entry is part of our series on viral marketing and word-of-mouth marketing – WOMMA


The 2016 Campaigning Summit Switzerland (CSCH) was held about ten days ago. This year’s event was great, just like in 2015. We met some very interesting people during #CSCH16 and we look forward to #CSCH17.

This year we made a real effort to get input from campaigning experts at the event. We wanted their input regarding our strategy and what needed to be done. We wanted help to further improve our chances for a successful project that crowdsourced people to help our crowdfunding campaign succeed, which would make it possible for a young girl to receive life-saving cancer treatment.

The support we got was amazing. People contacted their virtual as well as offline networks to reach out to the crowd for support. Of course, our hashtag #helpilayda seemed to help as well.

At the center of this story is Ilayda Yildiz. She was born December 17, 2005 in Singen, Germany, a community on the Swiss border. On February 27, 2012, shortly after turning six, Ilayda’s parents were informed that preliminary tests suggested their child had leukemia. Additional tests revealed it to be acute lymphocytic leukemia (ALL), also known as acute lymphoid leukemia or acute lymphoblastic leukemia. About 75 percent of all childhood leukemias are ALL (see New York Times – Leukemia In-Depth Report very nicely structured, plenty of facts, numbers and diagrams).

For 20 percent of those suffering from ALL, chemotherapy will not help. This is what happened to Ilyada Yildiz, who is now 10 years old, and has been fighting her disease for four years. Estimates suggest:

6,000 people in the US (National Cancer Institute),
1,500 in Germany, and
150 in Switzerland die annually because they suffer from a chemotherapy-resistant type of leukemia.

But thanks to a new therapy called T cell therapy, 92 percent of 39 kids treated using CAR T-Cell therapy showed no evidence of cancer one month after treatment (see Children’s Hospital of Philadelphia).

Various tests have found that the “CAR T-cell therapy can help patients that suffer under acute lymphoblastic leukemia (ALL),” (see ASH 2014, Abstract of study 382).

Unfortunately, this therapy is not covered by German or Swiss health insurance. The result is that those patients – primarily kids – die.

Just imagine what might happen if the treatment were covered:

Every year up to 1350 of 1500 patients in Germany, 130 of 150 patients in Switzerland and thousands more in France, Spain, Italy and the Netherlands could be cured!

To help save Ilayda Yildiz’s life, we launched the #helpilayda #crowdfunding #campaign.

We recently spoke with Ilayda’s dad, Nuhaci Yildiz and asked him some questions. Here is the extended interview, translated into English. The shortened German version was also distributed to the press.

Your donation will help save Ilayda’s life – donate now to the campaign trust account

1. Did you ever imagine you would get the funds you need?

All we knew was that we had to do everything we could to raise the necessary money. So many people have helped with that, and to this day, some of the most important wish to remain anonymous. They helped us with strategy, went out on their own and made amazing contacts, who in turn have supported our efforts and still do.

Thanks to social networks like Instagram, Facebook, and Snapchat, as well as YouTubers, bloggers, and print media, the campaign has gained enormous momentum since the end of February.

2. How much money have you raised so far?

We’ve raised over €500,000, and new donations come in every day. Even those funds will be put to good use, as the costs of follow-up and any additional treatments could easily reach another several hundred thousand, according to the doctors.

3. How do you feel about celebrities joining your cause?

We’re grateful, of course, but that was really just the beginning. The original idea behind having people like like Manuel Neuer, Cristiano Ronaldo, Sally and Bülent Ceylan take selfies was actually to cheer Ilayda up. Later, those selfies were shared among people’s social networks.

The major work of the ‘helpilayda’ campaign has only been going for about 10 days. We’re not quite sure where and how the donations are coming from. A lot is coming in through social media, but associations, private citizens, and corporations are also donating, among others. Plus a lot of supporters have done mass mailings and telephone campaigns on their own.

It is equally important that our situation is seen as an example of how amazing it is when people from across Europe and beyond help one another. Differences, whether race, religion, creed, or origin do not matter, and that fact is deeply moving.

4. Has Ilayda become a symbol for the fight against childhood cancers, and does that inspire pride, in spite of all your worry?

I don’t think I would use the word pride here. But I am convinced that many readers of this blog have been affected by similar situations in their lives, either directly or indirectly.

For example, someone in your immediate or extended family has a serious illness, which causes the family as a whole much pain, sorrow, and worry. Fear, loss of security (such as losing your job, as I did), etc., are all things that make a difficult situation even harder.

Our family is only one example. I am in awe of all the families I have had the privilege of meeting in the last five years. Many were brave and tried to make the best of very difficult situations, both medical and emotional. Each family suffers greatly when one of their children is so ill for so long.

5. When will Ilayda fly to the US and which clinic will she be treated at?

That’s an excellent question that we don’t know the answer to because it depends on so many factors.
Dr Rupert Handgretinger and his team in Tübingen are working to figure out when exactly Ilayda will be ready for such a long trip. We’re hoping that we’ll be able to leave within a couple of weeks, at the latest, because whatever we do, time is a critical factor. I’m sure the results of the next bone marrow biopsy will also play a part.

The clinic that will provide the treatment is also not yet clear, partly because we don’t know how soon Ilayda can fly to the US (i.e. a US travel visa), and which clinic can provide the best care as soon as possible. Of course, we hope to be on our way very soon. Even we still have several questions and this uncertainty is difficult to cope with.

6. What kind of therapy does Ilayda need?

Ilayda needs Chimeric Antigen Receptor (CAR) T-cell therapy, which requires gene manipulation. Basically, the patient’s own T-cells are removed and modified in the lab so they recognize other cells with a specific protein and attack them. The CD19 protein, which is found on the surface of almost all Type B cells (both normal and cancerous) can be used for this type of therapy. These modified T-cells are known in the medical field at “CD19-chimeric antigen receptor T-cells” or “CD19-CAR T-cells” for short (more information from the US National Cancer Institute).

7. Once the treatment is successful, what, besides good health, is your greatest wish for your family?

My fondest wish is that we will be able to live a completely normal life again. For us, that means the children go back to school in Singen and play with others their age and enjoy their youth. My wife will have a little more time to do the things she enjoys. And hopefully, I’ll quickly find another job. Those are our most important wishes. A simple life that unfolds predictably.

8. What has been your experience of your fellow human beings during all your years of struggle? How has Ilayda managed to touch so many people so profoundly?

Many people have helped, both near and far; in Germany and neighbouring Switzerland. Most surprising has been the support from lands far from Singen, like the Netherlands and the US. We haven’t been able to meet many of these people in person yet. But they have all helped us with administration, communications, and much more.

The medical personnel has also been absolutely amazing in treating our daughter and their support has been huge. We would like to thank all of them for their care.

9. How is Ilayda’s sister?

Given the situation, she’s doing quite well. Of course, her school work is suffering, no question. But her life philosophy and way of being are often pillars of strength for us. I admire her strength and optimism.

10. Should people keep donating? Surely, you’ll need funds to live on after all these years of caring so devotedly for your daughter. Where should the donations be sent?

Our donation campaign is only about Ilayda. What we’re concerned about is the cost of follow-up care and check-ups. Just last week, we learned that this will be equally expensive. The cost is a question we are often asked, but unfortunately, we ourselves don’t know the answer yet. If only we did.

At the moment, none of the doctors has an exact figure, but we know that our health insurance certainly will not cover it. But thanks to the many donors and helpful people, we hope to be able to manage this as well. Still, the first step is Ilayda’s treatment in the US, so she can finally go back to leading a normal life.

Her strength and sheer will to live inspire me every day, and often bring me to tears. Despite everything, my wife and I are hopeful for a happy future.

Your donation will help save Ilayda’s life – donate now to the campaign trust account

Please help Ilayda.

Register yourself to get our April post about the 6 best monitoring tools we used for this crowdfunding campaign via email.

The authors declare that they had no conflict of interest with respect to the content, authorship or publication of this blog entry.

Table 1: Creating a Foundation: Help Ilayda - The tear of an angel
At the moment we are trying to decide whether we should start a non-profit foundation, and if so, how. A foundation would enable full tansparency of when and how the donated funds are used, which is extremely important to the family.

Here is a summary:

  1. The mission of the Foundation is the advancement of science, research, medical care, and youth aid, as well as the support of people whose physical, mental or spiritual situation requires help from others.
  1. Fulfillment of this mission will be achieved through eight specific areas of focus:
  • Public education regarding rare diseases and how we can help through conferences, publications, and lectures;
  • Support for research and development;
  • Education for children, youth, and adults dealing with illness regarding their situation;
  • Assistance with or complete assumption of treatment costs, including but not limited to travel, housing, follow-up care, and check-ups, as well as delayed costs such as care assistance, and education, which are not covered by public health schemes, insurance companies and / or public institutions;
  • Day-to-day assistance for affected parents and children, such as housekeeping assistance, childcare, transportation, physical maintenance, and stress management;
  • Safeguarding the livelihood of parents and children in order to maintain an adequate quality of life;
  • Supporting children of affected adult patients or siblings of affected juvenile patients through activity programs, field trips or individual gifts;
  • Sponsorhsip of projects, organisations, people or establishments (i.e. pediatric cancer wards), with a mission and vision that aligns with our own.

How can you help?

We want this story to go viral and hope that through this crowdsourcing effort we can secure the funds needed to save Ilayda’s life, BUT after reading Ilayda’s blog entry, we need your help:

– What skills, talents, know-how, contacts can you offer to help save Ilayda’s life?

– Any other suggestions or ideas you have about the guidelines for our non-profit foundation?

10 thoughts on “#helpilayda crowdfunding campaign: Interview

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  • 22. March 2016 at 19:14
    Permalink

    Great to hear that so much money has already been collected by you guys.

    Because apparently it has not been decided which clinic will be used, can you tell me how this will be decided?
    Are there any conditions that must be met?
    Which hospitals can do this?
    Irene

    Reply
  • 23. March 2016 at 9:10
    Permalink

    Dear Urs and team,

    What an extraordinary success! Collecting so much money in such a short time as well as involving so many people is fantastic! My thoughts are with Ilayda and her family. May the treatment and anything that follows bring them the best possible results.

    What has come to my mind:
    1. Will the foundation support other families that do not have the possibility to motivate so many people?
    2. And what can we do to put “pressure” on the insurance companies in order to make this treatment available in Europe or at least to lower the cost?

    Keep it up!

    Cheers,

    Gaby

    Reply
    • 23. March 2016 at 10:59
      Permalink

      Dear Gaby

      Thanks for commenting. Yes, these are very important questions. I try to answer them below.

      1. Will the foundation support other families that do not have the possibility to motivate so many people?

      Yes we planned to help other families as the proposed charter of the Stiftung / non-profit foundation suggests:

      “- Education for children, youth, and adults dealing with illness regarding their situation;
      – Assistance with or complete assumption of treatment costs, including but not limited to travel, housing, follow-up care, and check-ups, as well as delayed costs such as care assistance, and education, which are not covered by public health schemes, insurance companies and / or public institutions;
      – Day-to-day assistance for affected parents and children, such as housekeeping assistance, childcare, transportation, physical maintenance, and stress management;
      – Safeguarding the livelihood of parents and children in order to maintain an adequate quality of life;”

      2. And what can we do to put “pressure” on the insurance companies in order to make this treatment available in Europe or at least to lower the cost?

      To lobby the health insurers in Germany or Switzerland, for example is important. But quite frankly, I have no clue how to go about this and whom to approach.

      As well, how much effort Novartis has put into these things to get the therapy approved in the EU and Switzerland is unclear. We have not received any response in this regard from the company.
      But I hope that Novartis will soon try Chimeric Antigen Receptor (CAR) T-cell Therapyin the EU and CH.
      The sooner the start with the trials the better for kids and adults suffering from this disease.

      If you or any of the readers of this blog have an idea, I am open to hear your suggestions and implement them as fast as possible.

      Happy Easter to you and your family
      Urs

      Reply
  • 24. March 2016 at 7:05
    Permalink

    Dear Jana and Urs

    I had an online chat with the National Cancer Institute (NCI) in the USA. Below is a summary of the transcript of my LiveHelp conversation. I put some material in here and hope it is useful:

    “01:55:40 PM]Pearce: Thank you for your patience and I would be happy to email you this converstaion.

    Unfortunately, with our database, there is no way to list the names of hospitals that are conducting specific types of trials. One would have to look at each trial to see which hospitals are included.

    What might be helpful is to reach out to the Children’s Oncology Group (COG).
    COG is an NCI-supported clinical trials group that is devoted exclusively to childhood and adolescent cancer research.

    To find a COG member institution (including those located in Canada, Mexico and other countries), search at the link below:
    http://www.childrensoncologygroup.org/index.php/locations/

    [01:56:28 PM]Pearce: You might also review their home page for additional information:

    Children’s Oncology Group
    https://childrensoncologygroup.org/

    [01:57:29 PM]Pearce: Additionally, you might contact the Pediatric Oncology Branch at the NCI Center for Cancer Research in Bethesda, Maryland.

    The Pediatric Oncology Branch (POB) conducts clinical trials for children, teenagers, and young adults with cancer and genetic tumor predisposition syndromes. Physicians and family members can contact POB if they are interested in determining if a child is eligible for a clinical trial.

    Phone: 301-496-4256
    Toll Free: 1-877-624-4878
    Website: http://pediatrics.cancer.gov/index.asp

    Sincerely,
    NCI’s Cancer Information Service
    1-800-4-CANCER (1-800-422-6237)
    http://www.cancer.gov/contact

    I hope this is useful also to other parents and patients alike
    Claudia

    Reply
    • 24. March 2016 at 7:35
      Permalink

      Dear Claudia

      Thank you so much for sharing this information. I am just summarising here in big letters 🙂

      What might be helpful is to reach out to the Children’s Oncology Group (COG). COG is an NCI-supported clinical trials group that is devoted exclusively to childhood and adolescent cancer research.

      To find a COG member institution (including those located in Canada, Mexico and other countries), search at the link below:
      http://www.childrensoncologygroup.org/index.php/locations/

      [01:56:28 PM]Pearce: You might also review their home page for additional information:

      Children’s Oncology Group
      https://childrensoncologygroup.org/

      Also very useful the information you provided as well here:

      Pearce: Additionally, you might contact the Pediatric Oncology Branch at the NCI Center for Cancer Research in Bethesda, Maryland.

      The Pediatric Oncology Branch (POB) conducts clinical trials for children, teenagers, and young adults with cancer and genetic tumor predisposition syndromes. Physicians and family members can contact POB if they are interested in determining if a child is eligible for a clinical trial.

      Phone: 301-496-4256
      Toll Free: 1-877-624-4878
      Website: http://pediatrics.cancer.gov/index.asp

      Sincerely,
      NCI’s Cancer Information Service
      1-800-4-CANCER (1-800-422-6237)
      http://www.cancer.gov/contact

      Such information makes it a bit easier to find more facts that one needs, of course.

      Claudia, merci bien for all this work and Happy Easter to you and your family.
      Urs

      Reply
      • 24. March 2016 at 7:41
        Permalink

        Dear Jana and Urs

        I received the following information from the NCI as well that I would like to list here:

        In coming to the United States, it will be helpful to reach out to the International Patient Offices of any hospital conducting the trial. They would be able to provide resources on how to come to the United States for treatment.

        The following resource provides additional information:

        How To Find a Doctor or Treatment Facility If You Have Cancer

        This is also very useful for patients and relatives who are in search of facts and information about the disease one of their loved ones might suffer from.

        Happy Easter
        Claudia

        Reply
        • 24. March 2016 at 7:58
          Permalink

          Again, thanks Claudia for sharing this.
          Such kind of infos I call real nuggets of gold.

          We have also mentioned another soruce of information earlier in our blog from the National Cancer Institue (NCI). One of its pages explains CAR T-cell therapy very well:

          CAR T-Cell Therapy: Engineering Patients’ Immune Cells to Treat Their Cancers

          The NCI has many more useful pages pertaining to particular kinds of cancer. Not only do this explain the disease including graphics, they also point out how far along the medical community is with clinical trials.

          I hope these links you gave us here in the comment can be a resource for other parents and patients.

          Happy Easter
          Jana and Urs

          Frohe Ostern
          Jana und Urs

          Reply
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