FAQs

Donation

How can I make a donation?

Donations can be made in a number of different ways. Please visit our donations page for more information.

Do I have to give my details when making a donation?

We do ask that you provide some personal details so that we can let you know we have safely received your donation and thank you for it. You can choose whether or not, and how, we contact you after that. It is entirely up to you. We do not sell or share your data with any third party and we take care of it with industry standard security arrangements, always ensuring we comply with the law. If you still wish to remain anonymous, there is the facility to donate in this way.

When I donate are my bank details safe and secure?

We use third-party providers to process donations by card, direct debit and online giving. These providers are well known organisations who operate to the highest industry standards. All processed data is encrypted and is as secure as any online shopping retailer you may use. Leukaemia & Myeloma Research UK does not store any of your bank details when you make a donation online.

If I set up a direct debit, can I change my mind?

Yes. A direct debit is a wonderful way to help others through our charity and means we have sustainable income to fulfil our work. However, you are free to cancel your direct debit via your bank at any time. You are also free to amend the monthly amount, up or down, at your will. Again, you can do this directly through your bank.

What are my donations used for?

Donations form a really important part of our charity’s annual income and are used to directly support our Mission “to prevent people dying from blood cancer through more effective treatment in the future.” Specifically, our charitable work is divided into three main parts, these are to actively support stem cell research into blood cancers, raise awareness of stem cell therapies and to offer a free stem cell storage service for qualifying families, which we call Model Cell Biobank.

I have received one of your clothing collection bags through my door. Does Fundraising Support Ltd. pay £50,000 per year to your charity, as stated on donation bag?

Yes, Fundraising Support Ltd pays a minimum of £50,000 to our charity per year, based on the Commercial Participator Agreement of 4th September 2017.

Can I make a donation in memory of a loved one?

Yes you can, and many of our supporters do so. Please see our donate in memory page for more information.

How much of my Unity Lottery fee does the charity get to keep?

For every £1 you play, our charity is guaranteed to get 50 pence. The other 50 pence goes into the prize fund and covering the administration costs of Unity lottery.

Fundraising

How can I raise funds for Leukaemia & Myeloma Research UK?

Thank you for considering helping us to raise funds to support others through our work. There are lots of ways you can fundraise on our behalf. You might choose to take part in an organised challenge or race, such as those provided by our partners Charity Challenge and Run for Charity. Alternatively you might take part in any other organised event of your choosing, seeking sponsorship on our behalf. Finally, you might choose to organise an event of your own. There are lots of ideas on our fundraising page. Please do contact us before you begin so that we can ensure you have the support you need.

Will you provide support for my fundraising event?

We try our best to ensure that we can support you in your endeavour. You can find lots of resources on our fundraising page which will give you ideas for fundraising activities and the types of materials, including a fundraising pack and promotional materials that we can share with you. If you have any questions please contact us.

How do I send you any monies raised?

If you are raising sponsorship online, then we ask you to create a JustGiving page which will allow us to receive the funds you raise. If you are raising cash, for example through a cake sale, we prefer you to send us a cheque to our Head Office, details of which are on our Contact page. Alternatively, if you wish to pay by bank transfer, please contact us for details.

I want to take part in a sporting event / challenge - do you organise these?

We don’t organise these events ourselves, but we work with partners who have enormous experience in these types of events. You can find more details here.

I am raising funds for a specific reason, such as the recent diagnosis or loss of a loved one. Would you like to hear my story?

People choose to support us for a wide range of reasons and we are always pleased to hear what it is that motivates you to support us. There is no need for you to share the reason if you don’t wish, and you can choose if you want to share the story just with us, or if you would be happy for us to share it more widely, on our website for example, as a hope and inspiration for others.

Leukaemia & Myeloma Research UK Charity

When and why was the charity founded?

Our charity was founded in 2015 by as a direct result of the loss of a loved one by a Trustee.

What are you trying to achieve?

Our mission is to prevent people dying from blood cancer through more effective treatment in the future. We are willing to fight blood cancer regardless of how long it might take. We aim to be the leading UK blood cancer charity specialising in stem cell therapy and actively support stem cell research into blood cancers, raise awareness of stem cell therapies and will offer a free stem cell storage service for qualifying families, which we call Model Cell Biobank.

Is the charity registered with the Charity Commission?

Yes, we are registered charity number 1161622 (England & Wales), SC046106 (Scotland), and a Company Limited by guarantee Registered number 09481278.

Can I reach you on social media?

Yes, we operate a Facebook page which we encourage you to visit, like and share, to spread details of our valuable work. Simply visit https://www.facebook.com/leukaemiamyelomaresearchuk.org/

Can I volunteer for you?

Thank you for considering volunteering for us. We hope to be in a position to accept and use volunteers in the future, but at the moment all of our energy is dedicated to our existing work. You could always volunteer as a fundraiser however, and you can find more information about ways to do this by visiting our fundraising page

Does your charity's research involve animals?

A lot of cancer research is carried out without involving using animals. However, for some very specific cancer research, the use of animals is essential if we are to beat blood cancer. We only support research involving animals when there is no alternative.

Model Cell Biobank

Why are you providing this service?

The charity, Leukaemia & Myeloma Research UK, wants to be the leading blood cancer charity specialising in stem cell therapy. The charity has set up the free cord blood stem cell banking service, to help those qualifying families who cannot afford to pay for private storage of their baby’s cord blood stem cells. This will enable that child or another member of the family to use them in the future if they need to.

Who is your partner?

Our partner is Biovault, a private human tissue bank based in Plymouth which began operation in 2004. Biovault is regulated by the Human Tissue Authority and works in partnership with the NHS for blood and bone marrow stem cell transplants, and also stores tissue and cells including cord blood for clients all around the world. Biovault holds a number of accreditations, including JACIE, the American Association of Blood Banks, National External Quality Assessment Service, ISO 9001 (maintaining quality management processes), ISO 13485

How many blood cord units have you stored?

Our partner, Biovault, has stored over 30,000 so far.

What security measures does Biovault have in place?

Biovault, as you would expect, takes security very seriously. Its facility is protected 24/7 by highly sophisticated fire and security systems. It has access control to all areas of the building where client data or samples are held. Biovault has a state of the art fire alarm, which is linked to a remote monitoring centre. Any fire alarm activation will trigger a response from the centre, who would call the fire service immediately if required.

Does Biovault store whole blood?

Biovault does not store whole blood samples. The stem cell samples are volume reduced, removing unwanted red blood cells upon arrival at the facility. This is in line with the public banks in the UK.

How can I be sure my cord blood would continue to be stored safely if Biovault ceased trading?

Biovault has an Escrow Account with a separate company, where the storage element of the money the charity pays goes into an account. This is held in trust by the independent third party ensuring that there are sufficient funds to carry on storing your stem cells whatever happens to Biovault.

Has Biovault released any samples for transplant?

Yes, Biovault works with the NHS and releases tissue and cells for transplant every week. It is the most experienced private tissue bank for the processing, storage and the release of human tissue and cells for transplant.

What does the Model Cell Biobank service offer?

We offer to process and store your baby’s cord blood stem cells in case they or another member of your family needs them in the future. The service is fully funded by the charity for qualifying families.

Can I pay for the collection and storage service?

Unfortunately not, the Model Cell Biobank service is a fully funded service for qualifying families. You can contact Biovault directly if you want to store privately and do not qualify for our service.

Where do you store the stem cells?

The stem cells are stored in our partner Biovault’s facility in Plymouth.

Why should I store my baby’s stem cells?

To help protect the future health of your child and family. Cord blood stem cells can be used instead of bone marrow stem cells when treating cancers of the blood. There are some diseases that you would not want to use your own stem cells for, you would want to use someone else’s. However there is a lot of research looking into the use of the stem cells in the future to treat diseases such as cerebral palsy, heart disease and Parkinson’s.

How long does it take to collect the stem cells?

The process only takes a few minutes. Once your baby has been born and the midwife has decided that you and your baby are OK, the collection will take place.

What do I need to do when I go into labour?

You need to take the collection kit to the hospital. It has everything that is needed to perform the collection and send it to the laboratory for processing.

I am having twins; will it be possible to collect the stem cells for both of them?

Two kits will be provided for the birth of twins, however, it may not be possible to collect enough cord blood from both twins.

Where is the cord blood collection kit sent to?

The collection kit is sent to the client’s home address.

What tests are done on the cord blood?

We test the cord blood to make sure that there are enough cells making it suitable for storage (total nucleated cells and stem cells). We also perform microbiology tests to check if it is contaminated or not. We will also perform some other tests on the cord blood that will be used if the stem cells are required for use in the future. We will send you a copy of all your results once they have been reported back.

What tests are done on the mother’s blood?

We have to test the mother’s blood for certain viruses. This is mandatory when storing tissue in the UK. We test for:

  • HIV 1 & 2
  • HTLV 1 & 2 (a test that we have to do when storing tissue in the UK)
  • Hepatitis B
  • Hepatitis C
  • Syphilis
  • CMV

Again, we will send you all of these results.

When are the results for the stem cells reported to Model Cell Biobank?

It will take up to 21 days for the results to be reported back to the charity. We will send you all the results as soon as we have them.

What happens if I have a positive result for microbiology?

A positive microbiology or virology result does not necessarily mean that your sample can’t be stored. The matter will be reviewed by our medical board.

Who controls the use of the preserved cord blood stem cells?

The mother, as the child’s guardian, has control over the stem cells, until the child is of legal age. Stem cells will not be released by Biovault without the mother’s consent or the child’s consent, once they have reached legal age.

If I am going to wait for the cord to stop pulsating can I still collect the cord blood?

If you are opting for a natural 3rd stage delivery where the cord stops pulsating before it is clamped, which can take a few hours, it will not be possible to collect the cord blood. The blood left in the cord will start to clot after about 10-15 minutes.

Will the service cost me anything?

No if you are accepted by the charity there will be no costs incurred by you unless you withdraw your consent to store once the stem cells have been processed and stored for you.

What about delayed clamping?

We ask that the collection procedure does not interfere with the birthing procedure. If the hospital practices delayed clamping, as long as it is not more than a few minutes, this is fine. The longer the cord is left for the blood to go back into the baby, the more stem cells go back into the baby, however there will be less blood left to collect at the end. It would be worth finding out how long your hospital waits until they clamp the cord and letting us know and we can discuss it further then.

How will I know if I am eligible for the service?

You need to check our eligibility criteria which are;

  • You are in receipt of Housing Benefit, Council Tax Support, Universal Credit or Disability Living Allowance

and that there is one of the following;

  • A medically proven treatment that the stem cells from your baby could be used to treat your baby or another member of the family (Specialist’s recommendation would be necessary).
  • Any cancer in the immediate family
When should I apply?

Once you have decided that you want to store your baby’s stem cells, simply call us or complete the online application and we will get the service set up for you. We recommend that the sooner you sign up the better to ensure that we have everything set up and ready for the big day.
The charity reviews each application and this takes time so the sooner you apply the better!

What documents do I have to send to you?

We will send you an application pack. In the pack will be some documents that we require you to complete, including a consent form, an agreement and a medical behavioural history questionnaire.
There is also a form that you need to take to your doctor for them to complete to state that you meet our medical acceptance criteria.
We will also need proof that you are in receipt of housing benefit, council tax support or universal credit.
Once these are complete you simply return them to us and we take care of the rest.

What is in the kit?

The kit contains everything that is required to collect the cord blood and the maternal blood sample. There are 2 kits in the collection kit: one to collect the cord blood and the other to collect the maternal blood sample. There are instructions for the person performing the collection and some forms for them to complete as well. There are also instructions for the parents on what to do once the collection has been made, including the telephone number to call to arrange for the collection kit to be collected by the courier.

When does the collection take place?

The collection takes place almost immediately after birth, as soon as the midwife decides it is safe to do so.

Where does the collection take place?

The collection can take place at the hospital or your home.

Can my partner / husband collect the cord blood stem cells?

Unfortunately not, it has to be a trained medical practitioner i.e: a midwife or a phlebotomist.

My Midwife has recommended the service to me but won’t collect the stem cells, what do I do?

Don’t worry, we can arrange for a phlebotomist, a trained healthcare professional, to collect the stem cells for you.

How do I arrange for you to collect the cord blood once my baby has been born?

As part of the process leading up to the birth, either the midwife would have agreed to collect the cord blood or we would have arranged a Phlebotomist to be there. You or your partner will need to call the number provided by the phlebotomist (who will perform the collection), to tell them that you have gone into labour and are in hospital; they will then keep in contact with you to ensure they are there in time to collect the cord blood once your baby has been born.

What happens when my baby is born?

Once the healthcare professional has collected the cord blood and it is packed ready to be collected, your birthing partner simply calls us and we will take care of the rest. All the instructions on what to do on the big day are sent you and they are also provided with the collection kit.

Will the collection interfere with my birthing plan?

No, the cord blood is only collected once the baby has been born, the cord clamped and cut in the normal way. The collection will only be made once the doctor or midwife is assured that you and your baby are OK, the health and well being of you and your baby are the number one priority.

How do I arrange for the cord blood to be picked up once my baby has been born?

The details of what you need to do once your baby has been born and the cord blood has been collected are in the kit under Instructions for Parents. You simply call the number provided in the kit and a courier will be arranged to come and collect the kit, they will normally be with you within two hours. If you call outside of the office hours (8am to 8pm), leave a message, then the next morning someone will be in touch to arrange the kit collection. Just keep the packed kit somewhere safe and at an ambient room temperature.

How will my child’s umbilical cord blood sample be transported to Biovault?

Biovault uses a specialist courier service, and makes all the necessary arrangements for you. Once the cord blood has been collected you can notify Biovault and it will facilitate the transportation of the package back to the laboratory. Target transit time is 48 hours. The packaging of the collection kit is designed to keep sample at optimum temperature for its survival and safety during transportation.

What happens after Biovault receives the cord blood?

The cord blood is checked to ensure there is enough to be processed and stored. The cord blood is then processed using a technique called volume reduction, to remove the unwanted red blood cells and plasma. The stem cells have a cryoprotectant added to them to protect them during the freezing process. The cells are then slowly frozen down to -196oC to ensure they can be stored long term. (It’s the same freezing process they use for sperm, which they have shown is viable 40 years on).
Samples are also taken during the processing for tests that are then performed to check that the cells are suitable for storage. All of the results will be reported back to you.

What if there aren’t enough stem cells in the sample?

It will not be stored and it will be destroyed as it does not meet the acceptance criteria.

If my child developed leukaemia, could I use their stem cells to cure them of it?

It is preferable to use someone else’s stem cells to treat leukaemia in your child, because there can be a genetic predisposition to leukaemia. The decision whether or not to use the cells would be up to the transplant clinician.

What are Stem Cells?

A stem cell is a cell with the unique ability to develop into specialised cell types in the body. There are different types of stem cells in the body. Cord blood contains blood Stem Cells that can be collected safely and painlessly, collecting them for potential use for your child or another family member in the future.

What can they be used to treat?

Stem Cells can be used for a variety of therapies. They can be used as an alternative to peripheral blood and bone marrow stem cells in the treatment of diseases such as leukaemia, sickle cell anaemia, lymphomas, immunodeficiency and other diseases of the blood.

How long do you store it for?

25 years, which is based on the most current clinical evidence available. After 25 years, you will be contacted to see if you want to continue storage.

What if I need the cord stem cells for my child?

Just call us and request their release. We will take your details and start the release process with Biovault.

Can the stem cells only be used for my child?

No, they can also be used for siblings and relatives, providing they are a suitable match, there is a 1 in 4 chance they will be a match for a sibling.

Will you use my child’s stem cells for research?

No. The stem cells can only be released with your consent. We have a very strict release procedure which will require you to give your written consent to release the cells to the hospital where the treatment is going to take place. The mother is the legal guardian of the cells until the child is 18 years of age and then the child is the owner of the cells. We cannot release the cells to anyone without your consent.

We do not carry our research on stem cells that we store for families, we support stem cell research by helping to fund it.
The collection process and storage of stem cells is regulated by the Human Tissue Authority, HTA, which prevents the release of stem cells without consent from the owner of the cells.

Can anyone use my child’s stem cells? Do they go into the public bank?

Only you can authorise the use of them. They can only be released with your consent or your child’s (the owner of the cells) when they turn 18.

What are cord blood stem cells used for?

They are used to treat disorders and diseases of the blood that can also be treated using bone marrow or peripheral blood stem cells.

If I move abroad do I need to move the cord stem cells with me?

No, it is safest to leave them in long term storage at our facility. If in the future you needed them, we would ship them for you in a specialised container that keeps the cells frozen for up to 5 days, so they can be shipped to virtually anywhere in the world. All you need to do is let us know your new contact details.

Are the cord stem cells stored for public or private use?

The Leukaemia & Myeloma Research UK Charity will store your baby’s cord stem cells for your child’s own use or for another member of the family should they need them, so for your own private use. You can choose to donate your cells to the NHS Blood and Transplant organisation, NHSBT, or the Anthony Nolan Trust. Our website has more details on how you can contact these organisations.

Can the cord blood stem cells be used to treat another member of the family?

Provided the stem cells are a suitable match yes they can. A tissue typing test (an HLA test) would have to be performed to see if they were a match to the family member. There is a 1:4 chance that a sibling will be a suitable match but the chance of a suitable match decreases, the more removed the family member. So, for instance, cousins would have a much smaller chance of being a match.

Can I save my baby's cord tissue?

The Charity currently offers to store cord blood only. Currently there are no proven therapeutic uses using stem cells from the cord tissue.

Registered charity number 1161622 (England & Wales), SC046106 (Scotland), Company Limited by guarantee Registered number 09481278 © Leukaemia & Myeloma Research UK 2018