- Hello EveryoneToni AbramFounderThe Information Point for Centronuclear and Myotubular MyopathyThe Information Point for Centronuclear and Myotubular MyopathyMosaic AppealThe Big Sunflower Projecthttp://centronuclear.org.uk/theinformationpoint2010/pages/ways_to_help/the_big_sunflower_project.htmlJoin the RevoloutionThe Information Point is hoping to publish the next issue of Our World around July / August time and we are now looking for people to take part in our 'All About Me' feature. If you would like to take part, please answer the questions below and return these to centronuclear.org@... with photos if possible.
The Information Point is keen to include stories about males and females, of all ages, by people affected by all forms of the condition and from anywhere within our global community. Answers can be as long or as short as you feel appropriate and you may answer for yourself or for a child in your care or you can submit a team effort, such as that submitted by Wendy and Zak Hughes in our last issue (http://centronuclear.org.uk/theinformationpoint2010/newsletters/2011/2011_1/zak.html).
If you feel there is more you would like to say that isn't covered by the questions please feel to amend them or include an introduction about yourself. If there is a question you would prefer not to answer, please leave it out.
If you take part, a draft copy of the article will be sent to you for checking prior to publication.
1. What form of cnm / mtm do you have e.g. dominant, recessive, x-linked, unknown?
2. When did you first get diagnosed?
3. What symptoms prompted your diagnosis?
4. How long did it take to get you diagnosis?
5. How were you diagnosed e.g. muscle biopsy?
6. What impact did the diagnosis have on you?
7. Have you explained cnm / mtm to family members and what was their reaction?
8. What implications do you think it has it had on your family?
9. Has it affected you e.g. telling your children, starting a family, genetic counselling?
10. Do you have advice for people who are looking for a diagnosis?
11. What are your current symptoms?
12. What treatment are you having, and have you had?
13. How did you find a doctor?
14. What has been your experience of the healthcare system and healthcare professionals?
15. Has your diagnosis had any health insurance implications for you?
16. What advice would you give to someone who has just been diagnosed with cnm / mtm?
17. What’s your favourite book / film / music?
18. What did you want to be when you were younger?
19. What is a favourite / memorable event from your childhood?
20. Who do you think has most influenced you in your life and why?
21. What’s the best advice you’ve been given?
- we would love to include stories and photos from some of the people taking part. The questions below have been put together to get you started but these can just be used as pointers - feel free to be creative and colour outside of the lines if you prefer!
If your sunflowers haven't flowered yet, don't worry, we are hoping to include more stories in our issue at the end of this year.Please email your stories to centronuclear.org@....Thank you everyone.Toni AbramFounderThe Information Point for Centronuclear and Myotubular MyopathyThe Information Point for Centronuclear and Myotubular MyopathyMosaic AppealThe Big Sunflower Projecthttp://centronuclear.org.uk/theinformationpoint2010/pages/ways_to_help/the_big_sunflower_project.html
- Who are you?
- Where do you live?
- How did you hear about The Big Sunflower Project?
- What variety of sunflower did you grow? e.g. dwarf or tall and what was it called
- Why did you grow a sunflower? e.g. did you grow it because you know someone with centronuclear / myotubular myopathy
- When did you grow the sunflower? e.g. what time of year did you start growing it
- How did you grow your sunflower? e.g. in pots or sowed directly in garden
- How tall did your sunflower grow?
- Have you grown sunflowers before?
- What have you learned from growing your sunflowers?
- Would you grow a sunflower again?
- Anything else interesting about your sunflower growing experience?