## **Trustees' Annual Report for the period**
Period start date Period end date 06 April 2021 05 April 2022
**From**
**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**
**----- Start of picture text -----**
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 JOSEPH IRWIN
3 LUCY FROST
4 ANDI THORNTON
5 KELLY JONES
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
Names of the trustees for the charity, if any, (for example, any custodian trustees)
Name Dates acted if not for whole year
**----- End of picture text -----**
March **2012**
**TAR**
1
## **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:
- policies and procedures adopted for the induction and training of trustees;
- the charity’s organisational structure and any wider network with which the charity works;
- relationship with any related parties;
- 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 disease, 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.
March **2012**
**TAR**
2
- Campaigned for access to treatment of Spinraza
- Worked with pharmaceutical companies and regulatory agencies to further knowledge and support the introduction of further treatments
- Ran a large number of educational webinars for those with and affected by SMA to help support them on key topics such as: `o` Physiotherapy
- Respiratory care
- Standards of care
- Dietary considerations
**Summary of the main** Provided support to families either by email or telephone as and **activities undertaken for the** when required **public benefit in relation to** Continued fundraising to further our goals **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)**
**Additional details of objectives and activities (Optional information)**
You **may choose** to include further statements, where relevant, about:
- policy on grantmaking;
- policy programme related investment;
- contribution made by volunteers.
March **2012**
**TAR**
3
## Section D Achievements and performance
**Summary of the main achievements of the charity during the year**
||~~~~
~~~~|We continue to represent families with SMA in various
technical processes.
Represent families in appraisals for treatments for SMA
(Spinraza, Zolgensma, Risdiplam)|
|---|---|---|
|||We continue to participate in oversight committees for|
|||Managed Access Agreement for Spinraza and Risdiplam.|
|||We have had a program of adult and children focused|
|||physiotherapy webinars hosted by physio Marion Main.|
|||We have offered a 24hr support and helpdesk service|
|||SMA Awareness Month where we held multiple webinars|
|||with experts on various topics regarding SMA, posted daily|
|||infographics and posted videos from community members.|
|||We continued to put our surveys and collection of data to|
|||submit for various appraisals|
|||We continue to advocate for patients who do not have|
|||access to treatments or who wish to access additional clinical|
|||trials.|
|||We gave AA Diet support and held meetings with dieticians|
|||to discuss a trial to explore the benefits of people with SMA|
|||following the AA Diet – with results being published in peer-|
|||reviewed journals.|
|||Amongst other things we now also engaged into new-born|
|||screening topics to ensure that families get diagnosis quickly|
|||and access treatments much faster.|
|||Written letters of support for community members for various|
|||issues|
March **2012**
**TAR**
4
## **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.
- the charity’s principal sources of funds (including any fundraising);
- how expenditure has supported the key objectives of the charity;
- 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** 20/02/23
March **2012**
**TAR**
5
TreatSMA ACCOUNTS 2021-2022
|**Type of activity**|**Money In**|
**Money Out**|
|---|---|---|
|**Opening balance**|19,318.29||
|On-Line Banking Bill Payment to Treatsma Ref: Soldo|||
|Expenses||500|
|On-Line Banking Bill Payment to Treatsma Ref: Soldo|||
|Expenses||500|
|On-Line Banking Bill Payment to Ginger and Tall LT|||
|Ref: Tsma Website||900|
|Donations|1,214.80||
|Donations||720|
|Donations|255.67||
|Expenses||16.95|
|Donations||250|
|Donations||6.22|
|Expenses||171.25|
|Donations||38.56|
|Expenses||204|
|Donations|15,163.00||
|Total
**End of Year Balance**|36,966.54
2,292.20
**34,674.34**||