Syndrome Association and the broader Bloom syndrome
community! This toolkit is designed to help make your fundraising
efforts a success. It likely will not answer all of your questions, so
we encourage you to contact us as you are getting started.
How am I helping the Bloom syndrome community?
The BSA is an entirely volunteer-run organization, with the mission
to connect, educate, and support the international Bloom
syndrome community and stimulate research that leads to longer,
In order to implement its programs and activities, including the
international patient & family conference, webinars, and its future
goal of more actively supporting research into treatments for
Bloom syndrome, it relies on donations from individuals. Your
support and your efforts are critically important to helping the
Bloom syndrome community.
Other ultra-rare disease groups have been able to achieve
tremendous progress in short amounts of time, due to dedicated
individuals in the community and successful fundraising. We want
the Bloom syndrome community to be able to do the same. We
must drive towards longer and healthier lives for Bloom syndrome
What does the BSA do with its donations?
The BSA develops strategic priorities it wants to address and
outlines the funding needs associated with those efforts. For the
2021-2023 timeframe, some of the more costly activities will be:
• Hosting a 2022 international patient & family conference
• Ensuring the Bloom Syndrome Registry has a sustainable
• Stimulating research and drug development efforts
For more information on the BSA and its programs, see:
Contact us: firstname.lastname@example.org
The first step in getting started is to let the Bloom Syndrome
Association know! As described below, there are several things
we can do to help, and it’s useful for us to know so that we can
help spread the word.
Many of us may have never done fundraising before, and it can
seem daunting or intimidating to take on. Others who have not
done fundraising before may think it’s just a matter of asking for
money, and hence can be easily done. Neither is right: fundraising
is something that can be done by anyone, but it does take time and
effort, and is primarily built on trusted relationships that need to
be nurtured and maintained.
There are many resources online about fundraising and we can
provide additional information as you begin your journey. For now,
it’s important to know the following1
• Most charitable donations come from individuals, either
through direct donations, or supporting events or other
• People give to people and organizations they care about.
Generally speaking, if there is no relationship, there is no
• People give money to make a change for good. They give
because they are presented with an opportunity to achieve
something and a vision of that achievement.
• It’s not enough to communicate the need for more money—
one must demonstrate a compelling reason.
It’s not bad to start small and build on successes over time. Say
you want to raise $250 through a small bake sale – in addition to
the funds, which are always welcomed, this also provides you with
an opportunity to share information about Bloom syndrome, which may lead to individuals in your network caring more about future
activities and ways to support.
What we can provide
As the BSA, we are able to provide the following:
• This toolkit!
• Answers to any other questions you might have
• Publicity on the BSA Website and the BSA Facebook page
• Example wording and Bloom syndrome facts that can be
used in your social media, email, or press outreach
• High-resolution files of the BSA logo
• If funds are made directly to the BSA (as opposed to being
collected by you and handed over to the BSA in a lump sum),
the BSA can provide:
o A donation receipt for tax purposes
o A thank you from the BSA
o Updates on BSA activities through the BSA mailing list
What we are unable to provide
As the BSA, we are able to provide the following:
• Any dedicated staffing at an event or fundraiser
• Insurance or liability coverage for your event or activity
• Reimbursement for any expenses
• Details or contact information of existing BSA donors
More frequently asked questions are answered in the FAQ section
of this toolkit. As always, contact
email@example.com with any questions and a
member of the Fundraising Committee will be in touch!
Once you’ve decided to hold an event or otherwise fundraise for
the BSA, it’s important to make a plan before asking for funds.
Here are some steps that may be helpful to follow
✓ Get a group together to help you in your efforts. This could
be just you and one other person, or a handful of people who
have asked how they can help!
✓ Discuss different fundraising ideas (see suggestions below)
o For example, do you want to hold an event, do you want
to commit to a personal goal (e.g. running a marathon,
or agreeing to be dunked in a tank if a certain goal is
reached), or do you want to do more private, one-onone outreach to your community to ask for support?
✓ Decide on which idea/approach to pursue, considering the
size, interests, talents, goals, and time availability of
o Think about whether you already have people in your
group who have successfully fundraised.
o Thank about who in your group will be able to help
spread the word.
o Think about your audience for an event. Who do you
want to attend, and what would interest them in
coming? What do you imagine a reasonable donation
would be, per person?
o Once you’ve decided, let the BSA know, if you haven’t
✓ Build out a budget for your event. Think about ways to
increase revenues such as donations of supplies or
sponsorship from local companies.
✓ Set a fundraising target to help your supporters know what
you’re aiming for.
o Remember that it’s more encouraging to meet and
exceed a goal than to fall short! Think through what
might be achievable.
✓ Think about how you want people to donate
o Do you expect people to pay in cash? If so, be sure to
include that information in your invitations and event
o Will you set up a fundraising page on a platform such
as GoFundMe, JustGiving, etc.? If so, you’ll need to
make sure the BSA is listed as a charity on the
platform. (More information on this is provided in the
“How to Get Funds to the BSA” section.)
✓ Make a timeline to help you keep on track, schedule group
meetings so that all of your team feel included and have
dates to aim for.
✓ Schedule the event (or launch date, if doing a campaign not
around an event).
o For events, think about what timing might work best for
o For events, think about whether you’ll be able to staff it
with your current team. Events can be exhausting, so
build in breaks for anyone who is volunteering their
o Let the BSA know the date, so we can add it to our
community calendar at the appropriate time.
Think about how you will publicize your event. (More about
this in the “Getting the Word Out” section.)
✓ Hold the event and collect funds. (More information on this is
provided in the “How to Get Funds to the BSA” section.)
✓ Say thank you!
o You can never thank donors enough!
o Use social media to do broad thanks, but also follow up
individually where you are able to. Let donors know
how much their support means to you and the Bloom
o If donations are made directly to the BSA, the BSA will
also follow up with thanks.
syndrome community. This list is by no means exhaustive! Think
about what is unique to you and your family or community and try
to make the fundraiser tie in those personal elements.
Bake sale / Lemonade stand
Garage/car boot sale
Casual clothes day at
Black tie event/dinner
Events can range from small
to large, and larger events will
likely be more complex to put
on. Think about what might be
reasonable for you to do, and
what your likely “return on
investment” will be (in other
words, you don’t want your
expenses to be more than
your anticipated funds
raised!). If you have questions
about lessons learned from
others, contact us!
Examples from the community
• The Princes in the UK organized a group that committed to
run 50 miles each in one month to raise awareness around
Bloom syndrome, and fundraise for their daughter Holly’s
expenses related to chemotherapy.
• The Webbs in Utah, USA organized a “Hot Cocoa for Coco”
stand selling hot chocolate for their daughter Colette
Date-based fundraising opportunities
Several dates throughout the year can be promoted as a good
fundraising opportunity. Here are some examples:
Rare Disease Day
End of year
Getting the Word Out
share it with people! Since Bloom syndrome is so rare, you’ll likely
also need to share information on what it is and why fundraising is
Sample Timeline for Publicizing your Event or Goal
3-4 months before the event: Identify target audience/
donors, inform the Bloom Syndrome Association of your
plans. For larger events, send a save-the-date.
4-6 weeks before: Create any posters, leaflets, social media
posts, email drafts. For events, send an invitation. Include a
link to the BSA’s donations page or to your own fundraiser
2 weeks before: Do follow up calls, emails, reinforce social
media, local radio, to make sure the word is out.
1-2 days before: Do a “dry run” to make sure you have
everything you’ll need for the event, confirm your helpers are
available and ready to participate.
Day of: Do your best to enjoy and not worry! Take pictures
and post to social media.
Suggested language describing Bloom syndrome and the BSA
Bloom syndrome was first described by New York
dermatologist David Bloom in 1954.
• Individuals with Bloom syndrome often have a facial rash in a
“butterfly” shape, although this rash is not present in all
individuals and often goes away with age.
• Even among rare diseases, Bloom syndrome is especially
rare. Since its discovery, only approximately 300 cases have
been reported, and it is estimated that there are a few dozen
individuals around the world diagnosed with Bloom
syndrome. As genetic sequencing becomes more common,
we expect this number to grow.
• Individuals with Bloom syndrome are at a higher risk of
developing a wide variety of cancers. Early screening,
detection, and treatment of these cancers can greatly
• The Bloom Syndrome Association (BSA) is an international
family support and patient advocacy organization for
persons affected by Bloom syndrome
• The BSA’s mission is to connect, educate, and support the
international Bloom syndrome community and stimulate
research that leads to longer, healthier lives.
Suggested language: what will donations support?
The BSA is a 100% volunteer-run organization. It has identified
several programs and initiatives it would like to provide for the
international Bloom syndrome community over the next few years:
• Hosting biannual Bloom syndrome community conferences
• Developing a “mentorship” program for families and
individuals to learn from one another
• Augmenting the registry to enable more research and to
allow for future clinical trials should any promising
treatments be identified
• Supporting research and development of treatments that
could lead to longer, healthier lives for individuals with
Suggested language: why is this important to you?
Remember that your donors will be giving because they care
about you and your family. In any messages, be sure to tell friends
and followers about why you are holding this event, and the
difference their donations will make not only to the BSA, but also
to you and your family. Tell your story!
The Fundraising Committee can provide sample emails, social
media posts, and thank you notes. Just contact us!
Showing Your Results and Building for the Future
Fundraising is an ongoing process, and it doesn’t end after your
event or campaign!
One of the most important things to do is to follow up
with thanking your donors. (If they donated directly
through the BSA’s website, the BSA will also send them
a note of thanks; see more on how this works in Section
7.) Note that if you used a third party platform like GoFundMe or
JustGiving, the BSA will not have information on individual donors,
so it’s especially important that *you* thank them, or they might
feel upset their donation was not acknowledged. Let them know
how much their support means to you, and to the Bloom syndrome
If you took photos or otherwise documented your event,
post them on social media. (If the event goes beyond
friends/families, please get permission to share
photos.) We’d love to see them in the Bloom Syndrome
Community Facebook page!
If you collected funds directly or through an online
platform, it’s important to make sure the proceeds from
your fundraiser get to the BSA (see Section 7). If you’ve
collected funds in person, it’s a good practice to count
money with another person present and also include details of
your fundraiser when you send in your proceeds so that the BSA
can show off your success and acknowledge your efforts.
Take some time to think about what went well and what
you enjoyed the most about your fundraiser – then write
them down so that you can use your own tips when you
start planning your next one.
If you asked people if they wanted to be added to the
BSA mailing list or otherwise identified individuals who
may want to volunteer for the Bloom syndrome
community, let us know who they are!
How to Get Funds to the BSA
There are several different ways to collect funds and to make sure
they get to the BSA. Here we’ll focus on three of the most common
ways, and briefly talk about the pros/cons of each approach. We
are happy to talk with you about your fundraiser and help guide
you as to which approach might make the most sense for your
Approach 1: Direct your donors to donate through the BSA
• In this approach, you’d tell your donors to donate here:
o They can donate to the “General Fund”
o In the “Donor Comments” field, you can ask that they
mention your fundraiser so that the BSA knows the
donation is related to your efforts
o Donations can be made through PayPal, or by check or
o Donors will receive an immediate donation receipt
o Donors will receive an email thank you letter from the
o Donor information will be saved and can be directly
added to the BSA email list to receive updates on BSA
activities and Bloom syndrome-related news
o Funds are subject to relatively small processing fees
(PayPal charges 2.2% + 30¢)
o You will not have direct visibility into who has given in
support of your event or campaign, although the BSA
fundraising committee can provide updates on a weekly
o You will not have an event-specific website where you
can put other materials
Approach 2: Use a technology platform like a Facebook
fundraiser, GoFundMe, JustGiving, Fundly, Network for Good, or
• In this approach, you set up a fundraiser yourself on one of
these sites, and select the Bloom Syndrome Association as
the recipient charity. The BSA should already be listed, but
contact us if not.
o NOTE: Sometimes there may
be several Bloom syndrome
related organizations registered
on a site. Be sure to select the
correct organization! The Bloom
Syndrome Association’s unique
tax ID number is: 800813615
• Funds are collected through
the platform, and then are sent as
a bulk donation to the BSA. This can take up to 60-90 days
after a donation is made.
o As the fundraiser organizer, you can see donations as
they are made and track progress towards your goal.
o Typically, you can add more materials directly on your
fundraiser to explain why you are doing it.
o For platforms like Facebook fundraisers, your
fundraiser can be shared easily over social media.
o Most platforms charge a processing fee for each
donation, meaning less funds are ultimately given to
Some platforms can approach close to 10% of the
o Donors will receive a donation receipt, but it will come
from the third-party platform, not the BSA.
o Donations are made to the third-party provider, and the
BSA does not receive information on individual donors,
so it cannot thank them or update them on the BSA’s
This is an important point! Please note that your
donors will not receive any acknowledgment from
the BSA unless we receive the donor contact
information directly from you!
Please also note that, as mentioned above, the
BSA does not receive funds from the third-party
platform until 30-90 days after donations are
made. Thus, there is some difficulty in matching
donations to individual fundraisers.
Approach 3: Collect funds directly and you donate to the BSA.
• In this approach, you will collect funds directly (in person or
sent to you) and then make a donation to the BSA.
o Once funds are collected, you can make your donation
through the BSA website, just as in “Approach 1”
o You’ll be able to see who donated, and when.
o If funds are given at an event, you can thank your
donors in real-time.
o Your donors will not receive donation receipts, which
they may want for tax purposes.
o More work for you to ensure funds are ultimately
donated to the BSA, and that your donors are thanked.
o Unless you provide contact information on your
donors, the BSA will not be able to provide a thank you
and/or provide updates on BSA activities.
There is no single “right” approach to use, and the BSA is working
to make donating as easy as is possible. What is important is that
you and your donors know what is possible through each
approach. In the meantime, please feel free to contact us with any
questions about the process or specific questions about your
Other Ways to Raise Funds
There are other ways to raise funds for the BSA, without
organising a specific event or fundraiser:
• Amazon Smile – choose to support
the Bloom Syndrome Association
when you shop at Amazon.com and
let your network/community know
about this opportunity!
o There is a link to our Amazon Smile account on our home
o Or go directly to smile.amazon.com
o When shopping, make sure you have the Amazon Smile
logo to confirm that your purchases will be counted!
o Amazon donates 0.5% of the price of eligible purchases to
• Get a match from employers
o Remind your donors that many employers match
donations made by their employees. Your donors can
contact their Human Resources department to find out
o This search also tells you if an employer matches
donations (it’s still worth checking with HR, even if your
employer is not listed!):
• Ask friends and families directly for support
o Contact us and we can provide advice and sample
language on how to approach people individually for
• Keep an eye out on the Bloom Syndrome Community page for
• Volunteer with the Fundraising Committee!
Frequently Asked Questions
Here are some frequently asked questions, but if you can’t find
what you’re looking for here, please get in touch at
Can receipts be issued to donors at my fundraiser?
If a receipt is required for a donation, the donation has to be given
directly to BSA at
https://bloomsyndromeassociation.org/page/donationsfundoptions. If you use GoFundMe, JustGiving or another fundraising
platform, those platforms will provide donation receipts. If you will
be collecting the funds yourself and submitting to the BSA,
donation receipts will not be provided. See more in Section 7.
Can someone from the Bloom Syndrome Association Fundraising
Committee help plan or attend my event?
We want to help however we can, so although we can’t attend the
event in person, please get in touch to let us know of your plans so
that we can help publicise your event and offer support from the
fundraising committee! firstname.lastname@example.org
Can the Bloom Syndrome Association contribute towards
expenses for my fundraiser?
As a non-profit organisation, the BSA is unfortunately not in a
position to contribute towards expenses for individual fundraising
Can the Bloom Syndrome Association provide insurance for my
All expenses, insurance, permits, licences are the responsibility of
the event organiser and unfortunately cannot be met by the BSA.
Can I use the Bloom Syndrome Association logos for promotion
In most cases, we will be able to provide logos for your use. It’s
just important to ensure in your messaging that you are
fundraising on behalf of the Bloom Syndrome Association, i.e. that
the BSA is a beneficiary, not that the BSA is doing the fundraising