Trustees' Annual Report for the period
Period start date Period end date 1st April 2024 31 March 2025
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To
Section A Reference and administration details
Charity name TREATSMA Other names charity is known by Registered charity number (if any)[1182610 ] Charity's principal address 85 Great Portland Street First Floor London Postcode W1W 7LT
Names of the charity trustees who manage the charity
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Dates acted if not for whole Name of person (or body) entitled
Trustee name Office (if any)
year to appoint trustee (if any)
GENNADIY
1
ILYASHENKO
2 LUCY FROST
3 ANDI THORNTON
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Names of the trustees for the charity, if any, (for example, any custodian trustees)
Name Dates acted if not for whole year
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Names and addresses of advisers (Optional information)
Type of adviser Name Address
Name of chief executive or names of senior staff members (Optional information)
Section B Structure, governance and management
Description of the charity’s trusts
Type of governing document
Constitution
- (eg. trust deed, constitution)
How the charity is constituted
CIO
- (eg. trust, association, company)
Elected by other trustees Trustee selection methods
- (eg. appointed by, elected by)
Additional governance issues (Optional information)
You may choose to include additional information, where relevant, about:
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policies and procedures adopted for the induction and training of trustees;
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the charity’s organisational structure and any wider network with which the charity works;
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relationship with any related parties;
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trustees’ consideration of major risks and the system and procedures to manage them.
Section C Objectives and activities
Summary of the objects of the charity set out in its governing document
We do everything possible to ensure that all people with SMA have access to effective treatments, health care and social support. We raise awareness of the condition, offer support to those affected and their near and dear ones, promote and support scientific research into causes and treatments, and provide necessary equipment and living aids.
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Continue to campaign for access to treatment of Spinraza, Risdiplam and Zolgensma on NHS
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Continue to be a part of Managed Access Program for Spinraza and Risdiplam together with NHSE and NICE.
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Work with pharmaceutical companies and regulatory agencies to further knowledge and support the introduction of further treatments
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Collaborated with SMA Reach, SMA Reach Adults and other Networks.
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Involved in governance of SMA Reach and SMA Reach Adults
Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)
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Offered number of educational webinars for those with and affected by SMA to help support them on key topics such as:
oPhysiotherapy -
Respiratory care
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Standards of care
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Provided support to families either by email or telephone as and when required
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Continued fundraising to further our goals
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Continue to contribute to New Born Screening Program in the UK
Additional details of objectives and activities (Optional information)
You may choose to include further statements, where relevant, about:
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policy on grantmaking;
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policy programme related investment;
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contribution made by volunteers.
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Section D Achievements and performance
Summary of the main achievements of the charity during the year
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We continue to represent families with SMA in various technical processes.
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We continue to participate in oversight committees for Managed Access Agreement for Spinraza and Risdiplam.
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We are now involved in final re-appraisal of treatments by NICE
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We have had a program of adult and children focused physiotherapy webinars hosted by physio Marion Main.
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We have offered a 24hr support and helpdesk service
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We continued to put our surveys and collection of data to submit for various appraisals
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We continue to advocate for patients who do not have access to treatments or who wish to access additional clinical trials.
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We are engaged into new-born screening topics to ensure that families get diagnosis quickly and access treatments much faster.
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Written letters of support for community members for various issues
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Section E Financial review
Brief statement of the charity’s policy on reserves
Reserves are carried through to next financial year to support further advancements in support for the SME community.
Details of any funds materially in deficit
N/A
Further financial review details (Optional information)
You may choose to include additional information, where relevant about:
The charity’s principal sources of funding is exclusively fundraising and generous donations by individuals. All expenditure is used to support the community and tools required to do so. No money is used in any way as renumeration of the trustees.
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the charity’s principal sources of funds (including any fundraising);
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how expenditure has supported the key objectives of the charity;
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investment policy and objectives including any ethical investment policy adopted.
Section F Other optional information
Section G Declaration
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
Signature(s) Full name(s) Dr Gennadiy Ilyashenko Trustee Position (eg Secretary, Chair, etc) Date 04/02/26
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TreatSMA ACCOUNTS 2024-2025
| Type of actvity | Money In | Money Out |
|---|---|---|
| Opening balance | 25,578.00 | |
| Donaton via PayPal: Direct Credit From Paypal | 2,563.26 | |
| Expenses: Reimbursment to Andi Thorton for IT | ||
| equipment and work bench | 951.13 | |
| Total | 28,141.26 | 951.13 |
| End of Year Balance | 27,190.13 |