|**Trust**|**ees' Annual Report**|**ees' Annual Report**|**ees' Annual Report**|**ees' Annual Report**|**for theperiod**|**for theperiod**|**for theperiod**|
|---|---|---|---|---|---|---|---|
|**From**|Period start date|||**To**|Period end date|||
||1st|April|2022||31|March|2023|
## **Trustees' Annual Report for the period**
**From To**
## Section A Reference and administration details
|**Charity name**
**Other names charity is known by**|
TREATSMA|
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**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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20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Name of person (or body) entitled**
**to appoint trustee (ifany)**|
|---|---|---|---|---|
||GENNADIY
ILYASHENKO||||
||JOSEPH IRWIN||Resigned November 22||
||LUCY FROST||||
||ANDI THORNTON||||
||KELLY JONES||Resigned November 22||
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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**||
March **2012**
**TAR**
1
## **Names and addresses of advisers (Optional information)**
|**Type of adviser**|**Name**
**Address**|**Name**
**Address**|
|---|---|---|
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|**Name of chief executive**|**or names of senior staff members (Optional information)**||
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## **Section B Structure, governance and management**
## **Description of the charity’s trusts**
Constitution Type of governing document (eg. trust deed, constitution) CIO How the charity is constituted (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**
March **2012**
**TAR**
2
|**Summary of the objects of the**
**charity set out in its governing**
**document**
**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)**|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.||
|---|---|---|
||
Campaigned for access to treatment of Spinraza, Risdiplam and
Zolgensma.
Worked on Managed Access Program for Spinraza and Risdiplam
together with NHSE and NICE.
Worked with pharmaceutical companies and regulatory agencies
to further knowledge and support the introduction of further
treatments
Collaborated with SMA Reach, SMA Reach Adults and other
Networks.
Ran number of educational webinars for those with and affected by
SMA to help support them on key topics such as:
`o`
Physiotherapy
`o`
Respiratory care
`o`
Standards of care
Provided support to families either by email or telephone as and
when required
Continued fundraising to further our goals||
## **Additional details of objectives and activities (Optional information)**
March **2012**
**TAR**
3
You **may choose** to include further statements, where relevant, about:
- policy on grantmaking;
- policy programme related investment;
- contribution made by volunteers.
Section D Achievements and performance
March **2012**
**TAR**
4
## Section D Achievements and performance
- We continue to represent families with SMA in various
- **Summary of the main** technical processes.
- **achievements of the charity** ~~~~ Represent families for MHRA re-assessment of gene therapy **during the year** for SMA
- 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 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.
- 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
## **Section E Financial review**
March **2012**
**TAR**
5
Reserves are carried through to next financial year to support further **Brief statement of the** advancements in support for the SME community. **charity’s policy on reserves**
**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** 20/02/24
March **2012**
**TAR**
6
TAR
March 2012
TreatSMA ACCOUNTS 2022-2023
|**Type of activity**|**Money In**|
**Money Out**|
|---|---|---|
|**Opening balance**|19,676.78||
|Donation: Direct Credit From Amazon Europe Core||38.56|
|Donation: AFTS Receipt From Bank Leumi UK|15,163.00||
|Donation: Direct Credit From Amazon Europe Core||33.21|
|Donation: Direct Credit From Amazon Europe Core||25.96|
|Donation via PayPal: Direct Credit From Paypal|2,457.23||
|Donation: Direct Credit From Amazon Europe Core||27.83|
|Donations: From L Harris||614|
|Expenses: Reimburmenst to Lucy Frost||204|
|Expenses: Reimburmenst to Gennadiy Ilyashenko||171.25|
|Total
**End of Year Balance**|38,036.57
375.25
**37,661.32**||